savvy caregiver advanced course trainer manual caregiver advanced trainer...program. participants...

Savvy Caregiver Advanced Course Trainer Manual

Ann O’Sullivan, OTR/L, LSW, FAOTA Kate Cole Fallon, MS, LCPC, NCC

Ken Hepburn, PhD Linda Samia, RN, PhD, CNL

December 2013

The project is sponsored by the Maine Office of Aging and Disability Services (OADS), Department of Health and Human Services, with funding from the

US Administration on Community Living

Savvy Caregiver Advanced Trainer Manual – December 2013

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Savvy Caregiver Advanced Trainer Manual Table of Contents

Introduction, Fidelity and Core Elements …………………………….…………………………… 1

Maintaining Fidelity to the Program …………………………………………………….. 4 How Does a Savvy 1 Trainer Become a Savvy 2 Trainer? ………….……….….. 6

Handouts / Resources for Each Session ……………………………………………………………. 7 Session One ……………………………………………………………………………………………………… 9 Review of Models from Savvy 1…..……………………………………………………….. 12 Need-Driven Behavior Model ……………………………………………………………… 16 The Environment of Behavior ……………………………………………………………… 21 Savvy Concepts …………………………………………………………………………………… 25 The Problem Solving Process …………………………………………………………….… 26 The Impact of Caregiving on the Caregiver …………………………………………. 32 Try It Out ……………………………………………………………………………………………. 35 Session Two …………………………………………………………………………………………………… 36 How Did It Go? …………………………………………………………………………………… 36 Who’s on My Caregiving Team? ………………………………………………………….. 37 Strengthening the Care Team …………………………………………………………….. 41 Guiding Behavior in Activities of Daily Living ………………………………………. 46 Try It Out ……………………………………………………………………………………………. 49 Session Three ………………………………………………………………………………………………… 52 How Did It Go? …………………………………………………………………………………… 52 Caregiving Challenges ………………………………………………………………………… 54 Resources ………………………………………………………………………………………….. 61 Guiding Behavior in ADLs …………………………………………………………………… 62 Try It Out …………………………………………………………………………………….…….. 67 Session Four ………………………………………………………………………………………………….. 68 How Did It Go? …………………………………………………………………………………… 68 Guiding ADLs ……………………………………………………………………………………… 69 The Care Team …………………………………………………………………………………... 74 Challenges and Self-Care ………………………………………………………………….… 75 Program Re-Cap ……………………………………………………………………………….… 77 Maine Statewide Collaboration and Resources ……………………………………………… 85


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Introduction, Fidelity and Core Elements Welcome to Savvy Caregiver Advanced! As a trainer for the original Savvy Caregiver program, you already know what a powerful impact that curriculum can have on family caregivers of people with dementia. We hope this manual will help guide and inform you as you add the Savvy Caregiver Advanced program (which we will be referring to as “Savvy 2”) to the training that you offer. The Savvy 2 program is an outgrowth of Maine’s success with the Savvy Caregiver (Savvy 1) program. Participants are caregivers who completed the Savvy 1 program at least 5 months previously, where the person with dementia continues to live in the community. Savvy 2 focuses on the challenges that are likely to be faced over time as dementia progresses. Like Savvy 1, Savvy 2 is a psychoeducational program. This means that it provides information and emphasizes skills and caregiver self-efficacy. Sessions incorporate practice and group reinforcement, meaning that people try things out and then get feedback. The course is experiential, and participants apply what they learn in class to their own situations. Classes are highly interactive, requiring active engagement in learning and practice and reinforcement of newly learned information / skills, and include debriefing and coaching as new skills are acquired. This form of training has been shown to be very effective. In fact, findings from Pinquart and Sorensen’s (2006) meta-analysis of caregiver interventions suggest that psychoeducational training had the broadest effect on caregiver outcomes. While both Savvy 1 and 2 can help caregivers of people with dementia, they are just two of the many caregiver resources that are available in the community. Trainers should be prepared to guide caregivers towards others supports and resources that may be helpful. It is also important that participants understand that Savvy 2, like Savvy 1, is not a support group, but is a training program. Caregivers often comment on their post-class evaluations that they want more time to share and discuss their situations with each other. Trainers can help them identify existing support groups to join or encourage them to form their own groups ongoing to meet this need. Virtual support groups are also an option for caregivers who prefer this means of connectivity. Where did the Savvy Caregiver Advanced program come from? When Maine began compiling feedback from caregivers who took Savvy 1, a number of responses indicated that caregivers would like additional training to address future needs, which led us to consider what might be helpful. A number of available interventions address caregiver symptoms of depression, stress and anxiety and are helpful in teaching skills that are adaptable. However, these tended to be focused on a specific point in the progression of care, and there seemed to be a need for responding to the ongoing training needs of caregivers.


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To learn more, the evaluation team added a question about ongoing learning needs and preferences to the five-month follow-up surveys for Savvy 1. Nearly half of the respondents reported that their role had changed due to increased demands, and 78% requested additional caregiver training. Half of those individuals offered input on future content. Maine applied for, and was awarded, a second Administration on Aging (AoA, which is now under the umbrella of the Administration for Community Living, or ACL) grant in 2010, with a major goal being the development and refinement of an advanced Savvy Caregiver course, as well as the creation of replication materials (trainer and participant manuals and train-the-trainer program). How Was the Content Developed? While the initial information on the 5-month surveys confirmed that a need existed, more information was needed to refine the framework and content of the program. The University of Southern Maine (USM) researcher analyzed the feedback on surveys to inform focus groups, which were then held in all 5 AAA regions of the state, with 26 caregivers participating (Samia, 2012). Analysis of the focus group discussions showed that caregivers enjoyed the interactive problem-solving of the group related to preparing for the future, shaping the troubling behavior of the care recipient, reshaping the resource team, and caring for themselves. It supported the need for advanced training as caregivers move through the trajectory of caring for persons with dementia.

Identified themes included the following learning needs:

Knowledge and skills to manage new needs / problems (maintain mastery) o Dealing with more challenging and troubling behaviors o Applying the tools acquired in Savvy 1 to a changing situation o Enhancing skills to assess care recipient unmet needs (the meaning of behavior) and to

fit activities and expectations to the person’s ability as dementia progresses o Strengthening skills to achieve contented involvement as dementia continues o Paying attention to the effect of the caregiver on care recipient behavior

Strategies for late stage physical care and activities of daily living (ADLs) o Coping with increasing dependency o Managing resistance o Shifting from reacting to / correcting behavior to assessing the situation and using

nonverbal communication in order to prevent discomfort and troubling behavior

Tools and ideas for planning for the future and facing tough decisions

Strategies for enhancing communication with others o Examining and reshaping the care team o Navigating the formal resource system

Reinforcement of caregiver self-care o Creating awareness of the future loss of their caregiving self o Needing reinforcement of strategies


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The learning needs identified in surveys and focus groups were then translated to an initial curriculum developed by Dr. Ken Hepburn, who developed the original Savvy Caregiver program. Southern Maine Agency on Aging (SMAA) and USM collaborated with him on creating materials and translating the curriculum to trainer notes. Dr. Hepburn came to Maine, offered a training to potential trainers, and got feedback. This was incorporated into the curriculum and SMAA delivered a pilot series to selected Savvy 1 alumni. The program was refined based on that group’s and trainers’ feedback, and the new version was piloted statewide, and then offered in all regions of the state. The resulting caregiver training structure has much in common with Savvy 1. It is also framed as a clinical training with all the elements of a psychoeducational program. The same eligibility requirements (family caregiver of a person with dementia who lives in the community) apply, with the addition of having completed a Savvy 1 course at least 5 months previously. The Savvy 2 series has four sessions, which are 2 hours each, and 6 – 10 caregivers take the class together. Savvy 2 addresses ADLs, caregiver self-care, future planning, and preparing for the challenges ahead. As with Savvy 1, caregivers are exposed to multiple models and strategies but the expectation is that caregivers will gravitate to the ones that best fit their situation and needs. The basic elements include:

A review of the strategies and models learned in Savvy 1

Introduction of additional models as frameworks for considering function and behavior o These models include

The Problem-Solving Process (Nursing Process Model) (Yura & Walsh, 1983) The Need-Driven Behavior Model (Need-Driven Dementia-Compromised

Behavior Model) (Algase, 1996) The Environment of Behavior model

In each session, the class walks through a different ADL, using the models. The curriculum is written using bathing, having a meal, dressing and toileting, although the trainer can incorporate a different activity if it is more relevant to the group.

Participants consider their caregiving teams, including evaluating who is helpful and who is not, considering who to bring in (formal and informal resources), and problem-solving how to ask for and receive help.

There is a strong focus on identifying and considering future challenges, including health care decision-making and options for end of life care. The types of grief that are often experienced by people assisting someone with dementia are considered, and coping strategies are suggested.

The importance of caregiver self-care, both in the present and in the future, is reinforced.

As with Savvy 1, participants are given suggestions about trying out strategies, and report back to the group for discussion and feedback.

As of August 31, 2013, 140 caregivers in Maine had participated in Savvy 2. Of these, 94% attended 3 or more sessions. Participants were overwhelmingly positive in their evaluation of


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the SCP-2 training, with 94.3% strongly agreeing or agreeing that the training was relevant to their situation, 97.2% strongly agreeing or agreeing that the strategies suggested to them in the program were useful to them, and 97.2% strongly agreeing or agreeing that they would recommend the program to other caregivers. Caregivers complete pre- and post-surveys to measure the effectiveness of the program. The measures and tools are the same as those used in Savvy 1, and include:

Caregiver symptoms of depression: Center for Epidemiologic Studies Depression Scale (CES-D)

Caregiver mood: Bradburn Affect Scale

Caregiver competence (Pearlin, et al)

Personal control beliefs: Mastery (Pearlin, et al)

Personal gain (Pearlin, et al)

Self-efficacy (Steffin et al, Revised Scale for Caregiving Self-Efficacy) Results suggest statistically significant improvement in caregivers’ sense of personal gain derived from their caregiving situation, improved negative mood, enhanced sense of self-efficacy in their ability to respond to disruptive behavior and fewer depressive symptoms. Development of Trainer and Participant Manuals One of the AoA grant goals has been to develop tools to make the program replicable in other areas of the country. To help meet this goal, Kate Fallon and Ann O’Sullivan, master trainers at Southern Maine Agency on Aging (SMAA), contracted with the State of Maine to develop the train-the-trainer workshop for associate trainers, and the participant and trainer manuals. The draft manuals were reviewed by Drs. Ken Hepburn and Linda Samia. Participant manual drafts were then reviewed by several SMAA Savvy 2 alumni, and their feedback incorporated. Manuals and accompanying feedback forms were given to participants in four Savvy 2 classes in different parts of the state, leading to the final version. The trainer manual was given to Maine’s Savvy 2 master trainers for review and comment. The draft manual was given to associate trainees to read prior to the training workshop, and their feedback was also incorporated into this final version. Use of this trainer manual in the development of each trainer’s notes is an important way to ensure fidelity to the Savvy 2 program. Maintaining Fidelity to the Program When delivering the Savvy Caregiver Advanced program, it is critical that trainers maintain fidelity to the curriculum and to the core elements that make the program effective. Introducing new elements or leaving out program components may still provide a quality program, but it will not be the Savvy Caregiver Advanced program and should not be identified as such.


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While individual trainers may use their own words and examples to teach the material, the program should be consistent with the training curriculum no matter who is teaching it. Under the AoA grant, specific mechanisms have been in place to monitor fidelity throughout the State of Maine. When the grant is completed, formal infrastructure may not be available for this. However, each agency delivering the program can consider how to monitor fidelity internally. This might include a trainer debriefing after each series, continued use of the fidelity tool, use of enhanced end-of-series evaluations, or other strategies to insure against program “creep”. Care must be taken to make sure new trainers receive standardized training, understand the curriculum, and have the knowledge and support needed to maintain fidelity to it. The term “core elements” refers to those program components that are key in delivering the program as written. Some are related to the structure of the course and some are related to content. Core elements of the Savvy Caregiver Advanced content include:

Developing understanding of advanced behavior guidance models and techniques to help caregivers as their person’s dementia progresses

Learning about several additional models for assessing their person’s behavior and developing more effective strategies for day-to-day care

Building awareness of resources available to help caregivers with advance care planning, end of life decision making, finding appropriate assistance and respite

Continuing to focus on self-care with an emphasis on redefining the care team

Following through on class material by participating in “Try It Out” activities between classes and reporting back on how things went

Following up on activities tried at home, with feedback from the trainer and the group on effectiveness and opportunities for improvement

Understanding the concept of “being comfortable” as an extension of contented involvement, which is introduced and applied to later stage dementia

Being introduced to the concept of self-advocacy when considering the emotional impact of caregiving (using the Feelings Quadrant)

Core elements of program delivery include:

The program is delivered in 4 two-hour sessions (total of 8 hours)

Classes have 6 – 12 participants

Each participant receives a participant manual and handouts o A list of all the handouts appears at the end of this section

Content for each session follows the trainer manual

Approved Savvy 2 slides are used for each session without additions or deletions

Each session is interactive with coaching

Classes are taught by a trainer who has completed the requirements as a Savvy 2 associate, master, or lead trainer

The Fidelity Checklist developed under the AoA grant can be used to help monitor fidelity. (See the Savvy 2 Policy and Procedure manual for information about this.) Agencies should continue


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to use the end-of-series evaluation form, perhaps with some added specific questions, to ensure fidelity. Debriefing, group discussions, and/or collaboration across agencies may help trainers stay true to the curriculum. Refresher / development training might also be offered. How does a Savvy 1 trainer become a Savvy 2 trainer? Savvy Caregiver Advanced trainers start out as Savvy Caregiver trainers. The process for becoming a Savvy 2 associate trainer (AT) in Maine is similar to the process for becoming a Savvy 1 trainer. The first step is to observe a series being taught, to become familiar with the content and the types of discussion that arise from the group. Trainers can then read the trainer manual and take a Savvy 2 AT training session. After that, they co-teach a series, and then teach on one their own. The Savvy 2 Policy and Procedure manual explains this process in more detail. This trainer manual was developed to assist trainers in learning the Savvy 2 material. In the following sections, each session of the course is explained, with the applicable slides appearing in the text. It is important to read the material thoroughly prior to using it, but then to develop your own trainer notes, that are consistent with the curriculum but reflect your own style for delivery. The intent is not that the information in the manual be read aloud to the class. When developing your notes, consider that some participants may have low levels of literacy and / or health literacy, and use plain language to share the content. After teaching the course, go back to your training notes and reflect on what worked well and what could be improved, and revise your notes (while maintaining fidelity to the program) for next time. The Savvy Caregiver Advanced program has gotten strong positive feedback from experienced caregivers. Thank you for your part in supporting them as they take care of their person.

References

Algase, D, Beck, C, Kolanowski, A, Whall, A, Berent, S, Richards, K, Beattie, E. (1996) Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer’s Disease and Other Dementias. 11, 10-19.

Pinquart, M, & Sorensen, S (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577-595.

Samia, LW, Hepburn, KW & Nichols, L (2012) “Flying by the seat of our pants”: What dementia family caregivers want in an advanced savvy caregiver program. Research in Nursing & Health. 35, 598-609.

Yura, H & Walsh, MB (1983). The Nursing Process: Assessment, Planning, Implementing, Evaluating (3rd ed.). New York, NY: Appleton Century – Croft.


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Handouts / Resources for Each Session

Training sites have electronic copies of the handouts developed for the program. Files and updates are available from the Office of Aging and Disability Services (OADS). Sources are included below for those that may be downloaded / ordered. Session 1:

Demographic data collection tools (if used)

Slide handouts

Caregiving challenges (immediate --> long term)

Behavior Log

Safety at Home for People with Dementia

Try It Out

Paper and pencils for floor plan Session 2:

Slide handouts

Guiding a Task

My Caregiving Team

Paper and pencils for care mapping Session 3:

Slide handout

Ongoing Loss: Ideas that May Help

Internet Resources / Free Internet Tools for Caregiver Communication (print back-to-back)

OOVL Decision-Making Tool

Legal and Financial Planning for People with Alzheimer’s Disease (NIA) http://www.nia.nih.gov/alzheimers/publication/legal-and-financial-planning-people-alzheimers-disease-fact-sheet

Connections books (available from OADS and AAAs)

Maine Hospice Council flyer about hospice (available from OADS)

Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Laurel Coleman) (OADS) http://www.maine.gov/dhhs/oads/aging/alz/alzheimer/endoflife_web.pdf

End of Life: Helping with Comfort and Care booklet (NIA) http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care

Agency on Aging resources: o Agency flyer o Information on living options, LTC assessments o Local resource information

http://www.nia.nih.gov/alzheimers/publication/legal-and-financial-planning-people-alzheimers-disease-fact-sheet

http://www.nia.nih.gov/alzheimers/publication/legal-and-financial-planning-people-alzheimers-disease-fact-sheet

http://www.maine.gov/dhhs/oads/aging/alz/alzheimer/endoflife_web.pdf

http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care


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Also useful, but optional:

Hospitalization Happens (NIA) http://www.nia.nih.gov/alzheimers/publication/hospitalization-happens

Pain in Dementia (AGS Foundation for Health in Aging) http://www.geriatricpain.org/Content/Education/Patient/Documents/Pain%20in%20Dementia.pdf

Session 4:

Slides handout

Class evaluation form

Certificates

http://www.nia.nih.gov/alzheimers/publication/hospitalization-happens

http://www.geriatricpain.org/Content/Education/Patient/Documents/Pain%20in%20Dementia.pdf

http://www.geriatricpain.org/Content/Education/Patient/Documents/Pain%20in%20Dementia.pdf


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Session One

Materials needed:

Extra pre-survey forms

Demographics data collection tools, if used

2012 replacement pages to update Savvy 1 manual (if applicable)

Flip chart, with pages prepared as indicated in notes

Slide handouts

Plain paper and colored pencils

Behavior Log handout

Safety at Home for People with Dementia handout

Caregiving Challenges handout

Try It Out sheet

Savvy Caregiver Advanced participant manual

o A NOTE ABOUT THE PARTICIPANT MANUAL: The Savvy 1 participant manual was

designed to generally correspond to the content of each session sequentially. In Savvy

2, some topics, such as guiding activities of daily living, are addressed in multiple

sessions. In an effort to make the participant manual most useful as an ongoing

resource, it is organized by topic, rather than by session. This will enable caregivers to

easily locate the information they need when they refer to it in the future.

o This trainer manual includes references to the relevant pages in the participant

manual, so that trainers can point them out in class.

Appendix materials for participant manual

o The participant manual includes an appendix of supporting resource materials with

links to their sources. Each trainer/agency is responsible for printing these out, and

including them in the participant manual materials.

Your group will be comprised of seasoned Savvy participants. Assure them this series will

operate in a very similar fashion. Encourage people to be comfortable and practice good self-

care.

All are strongly encouraged to attend all four sessions but if they can’t, share protocol for

cancellation and for bad weather.

As with Savvy 1, session one is information dense. Participation is most welcome but we once

again want to be sure we are all starting in the same place. Sessions 2 - 4 are much more

interactive.

As always, trainers will be the “time witches” to be sure we stay on task and finish on time.


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Remind them that they will have opportunity to practice at home and emphasize the

importance of the Try It Out activities (this might prompt them early on in the session to think

about which strategies they want to try at home as they are being reviewed / introduced).

Overview Slide (20 minutes, including introductions)

It is helpful to offer some explanation about how and why the Savvy Caregiver advanced class

(Savvy 2) was developed. As mentioned in the Introduction section, it became clear through post-

surveys that caregivers had found Savvy 1 to be very effective but they were looking for

something further. The investigator from USM invited Savvy 1 graduates to focus groups

statewide and the feedback received formed the foundation of Savvy 2.

Highlights from the focus group results:

The state-wide focus groups identified three main themes which guide the program.

This advanced training will introduce participants to material that is new to them. It will tie in

with material from Savvy 1 and it will depend on their knowledge of the Savvy material.

The three areas identified in the slide will be emphasized across the four sessions of the

program.

The three areas and their goals are:

o Behavior: Participants will be able to guide and structure the day-to-day behavior of

persons in more advanced stages of their cognitive loss.

o Resources: Participants will be able to analyze their need for help in caregiving and

will acquire skills and information to help them better meet those needs.

o Challenges: Caregivers will continue to appreciate the potential emotional impact of

caregiving, be able to use techniques to find positives in their caregiving, recognize the

kinds of challenges they may face, and obtain information about ways to face and

resources that might help them to face these challenges.


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Dr. Ken Hepburn, who developed the original Savvy Caregiver series, built the framework for the

training. The researcher at USM and Master Trainers at SMAA worked with Ken to create a series

that was piloted to a select group of Savvy 1 graduates willing to offer constructive feedback in

order to then rework the material. At that point the program was piloted state-wide and has

been offered ongoing since.

The overarching aim of this first session is to offer additional frameworks for caregivers to draw

from in order to better and more efficiently guide and shape behavior. The review of previous

Savvy models is an opportunity to bring everyone onto the same page again, and to highlight how

all these models work together. The overview of the Problem Solving Process is where all the

pieces start to really fit together. Finally, participants will have the chance to consider the

challenges they are facing and how important self-care still is. This opens the door to finding

resources and asking for help, which we will explore in later sessions.

As far as focusing on addressing behavioral issues, Teri’s ABC model is a straightforward way to

think about behavior in general, and it serves as a very good way to perform the first step of the

Problem Solving Process, namely to assess behavior. Other Savvy 1 principles – Fit, the Anchors

of Contented Involvement, and the impact of confusion – are useful in planning and

implementing a behavior guiding or re-establishing strategy, and for then evaluating the

effectiveness of that strategy. In the current program we want participants to develop keener

skills of behavioral assessment and analysis, so we will reintroduce the guiding principles of the

original Savvy.

Introductions

Your name

Who are you providing care for?

About how much of each day do you spend

caregiving?

Introductions

This exercise begins the formation of a group, so it is important to foster respectful listening

and interaction, without letting the process take on a support group dynamic. The main point

of this portion is to establish the broad outlines of the caregiving that is currently going on.

Remind people gently that time is limited and use simplified Introduction slide (above). Guide

them to just answer the questions as there will be time for more exchange a bit later.

If it helps to move things along – and also to keep things in memory – you could use a flip

chart in this activity.


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Review of Models of Behavior

from the

Savvy Caregiver Program

Review of Models from Savvy Caregiver (10-15 minutes)

Found in participant manual pages 3 – 8 and Savvy 1 manual

The introduction slide leads to 10 slides from original Savvy.

We will be referring back to many of these themes as the series progresses.

With each slide, remind participants about the key or central concept and where relevant, the

teaching exercise from the original Savvy program. Some participation might be helpful to

see how people are using the concepts.

The facilitator’s task, from group to group, will be to reinforce the strategies participants are

using and encourage them to tap back into all of them ongoing.

This portion should serve to remind participants about the key ideas and to establish

language shorthand terms for ideas that you will want to use in subsequent parts of the

program. It offers a “refresher” for the language of Savvy.

Be mindful of time. This review is brief. Be sure to leave enough time for new information

that follows. Keep explanations simple.

Slides to review:

o Contented Involvement/over and under stimulation. As we begin to address issues

involved in later stage care, we introduce the concept of “being comfortable” as part

of contented involvement. In more advanced dementia, comfort will be a more

appropriate measure of how things are going, and will be a reasonable goal of care.


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o Confusion is always a possibility. Here we see all the elements of thought affected by

dementia. Remind participants of the driving in snow exercise from Savvy 1.

o Confusion Discomfort Behavior

o ABC Model (Linda Teri). All behavior has meaning.


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o Person-Others-Surroundings. The key here is that the person with dementia is

gradually less in control of their own behavior.

o Comfort Zone (Hall and Buckwalter’s Progressively Lowered Stress Threshold)

o Key elements of performance (purpose, order, use)


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o Anchors of contented involvement (fit task to ability). In Savvy 1, we used the cookie

making exercise to demonstrate the idea of fit. This may be a way of reminding

participants of this concept, and their own innate ability to fit activities and

communication to the abilities of their person.

o Structure of a task – Helpful guide to using the Allen levels to set up activities.

o Order of support strategies


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Mention that we will be building on their understanding of all of these concepts in a way that

will connect and enhance them.

Remind participants that all these models are covered in the Savvy 1 caregiver manual.

Reviewing the information in this manual occasionally, if they aren’t already, may be very

helpful.

Transition: Introducing Models of Behavior

Need-Driven Behavior

The quick review of the Savvy 1 material is over, and now you begin to move into the new

material that is being introduced in the Savvy 2 program. The majority of the new material

focuses on conceptual models that provide ways of understanding and guiding behavior.

There is no expectation that everyone will always utilize every model. People will likely find one

or two that resonate with them and default to them. Be sure participants understand that this is

fine. They are encouraged to take what works for them, and leave what doesn’t. Emphasize that

models are simply frameworks for understanding the person and developing strategies. If

participants use them as part of their clinical outlook, they will become automatic over time.

All of the behavior models in the Savvy Caregiver programs provide ways for the caregiver to

conduct an assessment, to formulate a strategy, to evaluate the strategy, and then to re-assess

and reformulate, if needed, based on this evaluation. What is important is that caregivers leave

the program with confidence in and a sense of competence with some process that 1) takes all of

these elements into account and 2) appreciates that the process is cyclic and on-going. It is not

necessary that they know the names of the models, and we are not advocating one model over

any others.

Need Driven Behavior Model

Found in participant manual pages 9-11

We are now presenting new information. Remind participants that these new models are only to

reinforce what they already know, and to offer them another way of identifying what is

influencing behavior and designing strategies. By the end of session one, we will have a thorough

overview of how to observe and analyze behavior in order to plan for more successful strategies.


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Need Driven Behavior Model (Overview) (15-20 minutes)

Background information: This addresses the core theme of behavior guidance and structuring, as

mentioned in the focus groups.

This model (pioneered by Dr. Donna Algase) is based on the idea that the unexpected and often

troubling behaviors in which persons with dementia engage represent attempts at

communication. The disease progressively erodes a person’s ability to identify a negative

stimulus and, eventually, even to recognize that there is such a stimulus. It also erodes a person’s

capacity to effectively communicate when something is bothering them or what it is. So behavior

can be seen as the expression of an unstated need.

The needs-based model and the ABC model share many attributes. However, the way one model

speaks about behavior may be more appealing to some people than the way the other model

speaks of it, so this is a way to be sure people leave the program as equipped as possible.

This model recognizes that some things (Background Factors) that might contribute to behavior

are things over which the caregiver has no control. It also recognizes that as dementing diseases

progress, their progression has increasing influence on behavior. This is very consistent with

everything participants have learned in Savvy 1. Finally it recognizes that these background

factors have bearing on the current factors in the situation over which the caregiver does have a

degree of control. Both background factors and current factors (discussed in more detail below)

influence behavior – and behavior is a form of communication.

It is important to point out that, while the model appears focused on what might be called

troubling behaviors, it is more general in nature and can be used to structure and guide any

activity as part of the Problem Solving Process, which we will cover later in this session. This is

one more approach to looking at any puzzling behavior and seeing the meaning behind it.


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Unexpected Behaviors

Physical

Verbal

Emotional

Unexpected Behaviors

We start off with a brainstorming exercise to explore what is meant by “unexpected” behaviors.

They don’t need to be significant or especially disruptive behaviors, but anything caregivers find

troubling, confusing, or disturbing as well as just puzzling. These may be behaviors they have

seen, or that they have heard about or are concerned they may see in the future. Use a flip chart

to categorize the behaviors as physical, verbal and/or emotional. Here is one example of a flip

chart page you can make ahead of time:

Physical Verbal Emotional

Pacing x

Repeated questions x

Sadness x

Paranoia x x

If the group is hesitant, offer some examples of typical behaviors:

o Physical – Striking out; being tearful; physically resisting; destroying objects; throwing things;

pacing; struggling to get out doors; sleep disturbance

o Verbal – Yelling; threatening; cursing; repeating over and over; talking in ways that don’t

make any sense; “word salad”

o Emotional – Extreme emotions, suddenly laughing or crying; completely withdrawing; anger;

paranoia

Here we are beginning to find a way to think about the “meaning” of behaviors. Even apparently

unexplainable behaviors can be understood as a form of communication by the person, though

not an intentional form.

These behaviors may be present when the caregiver is trying to get the person to do something,

or the caregiver may just observe them at a time when there appears to have been no

antecedent. The kinds of behaviors focused on may be thought of as “extreme,” but caregivers

may have seen more subtle manifestations: quietly pushing away a spoon; a sharper than usual

“no” when being helped to the toilet; a cloud crossing the person’s face when s/he couldn’t do

something. So the model applies to daily life.


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Background Factors

There are background factors that may affect behavior and may also have an influence on current

factors, contributing to the kinds of behaviors that caregivers find troubling or difficult. These all

can be taken into account in the assessment of behavior.

Go through each of the background factors, asking participants if they have examples that offer

specifics of the broad concept of background factors. If none are forthcoming, have some

examples of each to offer in order to make the concept clearer.

Dementia stage: Savvy participants likely appreciate the impact of the declining powers

associated with dementia progression. The increased possibility of confusion, the progression to

another stage of the illness and the corresponding decreased capacity to perform daily tasks

increases the likelihood that any request to engage in a task may bring on an unexpected

behavior.

Health problems: As dementia progresses, people become less aware of their own discomfort

and less able to report that something “feels wrong.” Sensory losses (hearing, vision) can also

progress. A person’s underlying health issues may affect their ability to participate in an activity.

For instance, a person with dementia might resist going upstairs for a shower because the

arthritis in his/her knee becomes painful while climbing stairs

Personality: Research suggests that people who were “difficult” and had non-agreeable

personalities earlier in their lives may be more likely to be difficult and disagreeable as their

dementia progresses. A person with a strong sense of privacy may be uncomfortable being

assisted with bathing or toileting.

Neurological problems: Pain and other coexisting diseases like Parkinson’s need to be

considered.

Life history: Troubling events from the past along with previous patterns of difficult behavior

may be influencing behavior in the present. Encourage participants to revisit personal history to

consider otherwise unexplainable behavior. Note that past trauma may become a trigger.


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These factors cannot be changed but caregiver awareness about them may guide strategies for

dealing with them.

Current Life Factors

These are factors that may impact behavior which caregivers can assess and, once understood,

may be addressed to improve behavior. Encourage participants to direct their energy toward

things they have the power to change.

Bodily needs: Consider this first as it becomes more and more difficult for people with dementia

to identify and report discomfort. Consider hunger, thirst, fatigue, dehydration. Might there be a

reaction to medications, pain, constipation, or change in diet? Do they need to use the

bathroom? Consider also infections, sore throat, urinary tract infection (UTI), etc. In addition, a

background factor like arthritis may create a current factor of pain. As in the example above, pain

may be creating an unexpected behavior of resistance to bathing.

Emotional needs: Again, behavior is a form of communication. Consider all the feeling states

likely to be experienced in someone with dementia, like fear, isolation, sadness, frustration. And

then consider that they are unable to recognize or communicate this. Studies have shown that

comfort items can help to create calm. This may include stuffed animals or dolls, a soft throw,

prayer beads, or even a purse. Also note that a background factor like incontinence may create a

current factor like embarrassment.

Physical environment: Consider how the environment is impacting behavior (person-others-

surroundings). Might it be too stimulating, or not stimulating enough? Is there too much clutter,

or noise? Is it too hot, or cold, or bright?

Interpersonal environment: How might the person be reading the caregiver? It is very likely that

people at advanced stages of the disease have strong emotional radar. They can read or pick up

on what those who are helping them are feeling. So, if a caregiver is feeling frustrated or hurried

or impatient, the person may well get this message and react to it. Everyone feels like this at

some point. Assure participants there is no need to beat themselves up over this, just be sure to

account for it as a factor.


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One additional note: emphasize that sudden changes may signal serious physical problems that

the person cannot report on. These can include broken bones, serious infections, or even heart

attacks.

NOTE: The slide showing the Need-Driven model is repeated here to illustrate how the pieces fit

together.

The Environment of Behavior – Intro slide (15-20 minutes)


This section is meant to sensitize participants to the effect of both the home and the social

environment on the person, especially as dementia progresses. Although there is an emphasis on

structure in the anchors of contented involvement, here we look at the broader environment, the

living space of the person and caregiver. The object of the exercise will be to identify if there are

elements of the home environment or activities within it that need to be modified in order to

promote greater calm and foster contented involvement.

The program now shifts to directly consider the impact of the environment on behavior. Point out

that the environment has been a factor all along, though not explicitly. When Savvy speaks of

structure (as in structure and support), it addresses not only the set-up of a task or activity but


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the specific location or environment of that activity. The environment can also provide

antecedent stimuli for unexpected behaviors (in the ABC model).

As the person’s own capacity for directing behavior decreases, the power of the surroundings to

shape behavior increases (person-others-surroundings). The physical environment is included in

the current life factors of the Need-Driven model, but now we look at the environment more

thoroughly.

We will consider safety issues as well, but it’s more than a scan of the area. It is a serious effort to

incorporate place and space into the models of behavior guidance we cover in both Savvy 1 and

2. The environment has to be examined in terms of the potential threats it harbors as well as in

terms of the safeguards that are built into it that assure the safety of the individual.

Now that we have considered background and current factors as antecedents to behavior, we will

also look at how the environment can stimulate and respond to behavior. Remind participants

too about the “person-others-surroundings” model and how environment becomes a significant

factor.

Where Care Occurs

Think about where care takes place

What happens where?

Unused spaces?

Spaces for transitions?

Where Care Occurs

Have blank paper and colored pencils available

The purpose of this exercise is to bring awareness to the patterns of use in the environment.

Encourage people to work on this throughout the exercise. Outlining the living space on paper is

helpful though not essential. Invite them to draw a floor plan or even make a list of spaces. The

key is to get people to think about the space they are in regularly, and to incorporate that space

into the way they think about behavior guidance.

Guide participants to consider the space of their daily lives. Offer a couple of minutes for them to

make notes. Talk them through thinking about their spaces, being sure to include their home,

useable outdoor spaces (patios, screened porches, gardens), basements, attics, garages and cars.

Be sure they consider any space where they and/or their person go on a regular basis.


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Then move on to transition spaces: walkways, hallways, and stairs. How does their person react

to these spaces? Are they neutral or do they create either positive or negative reactions?

Once they have a sense of all the spaces they use, ask them to make note of where activities of

daily living (ADLs) take place. What about other activities? Be sure to explain that ADLs are

eating, dressing, bathing, toileting and transferring. Although we focus our discussions largely on

ADLs in this series, the models apply to any activity.

Are there spots that their person is drawn to? Are there places where activities typically go very

well? What about places where activities are particularly challenging? Give them a few moments

to ponder all these options and to make some drawings or notes. They are being asked to think

about things from a new perspective.

Trouble Spots and Comfort Spots

Open the subject up for discussion. Ask if anyone noticed any patterns. Did anyone observe any

places where there is a pattern of cooperation, or resistance? Are there certain places where

their person likes to be?

Where do there tend to be behavior difficulties? Are there any surprises? Encourage discussion

about successes. Remind them that comfort spots can be important antecedents to behavior

guidance and shaping, and these may be places to try out activities that tend to be more difficult.

Environmental Factors

Accommodation

Simplicity

Focus

Reinforcement


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Environmental Factors

As participants begin to take control of the environment in order to guide and shape behavior,

there are some basic helpful strategies they can use:

Accommodate: Consider sensory losses, both in the environment and in the approach to care.

Light and sound impact how one experiences an activity, as does room temperature. Consider

how vision or hearing losses affect the person’s ability to understand and attend to activities.

Simplify: Reduce distractions, which have a greater impact as dementia progresses. The

demands of a “busy” environment can compete with a caregiver’s efforts to guide the person

through a task or activity.

Focus: Even when a task is simplified, sitting facing a window will create a challenge to

attention. A narrower view of the environment will promote greater engagement.

Reinforce: Elements in the environment can be used deliberately to promote engagement in

a task or activity. Smells of cooking to increase appetite; running water to support bathing or

toileting; clothes laid out to encourage dressing.

Putting it All Together

Optimize spaces for behavior

Avoid trouble spots

Change environments

Putting it All Together

Here you can pull the threads of the exercise together. This may be done as a group discussion or

as a guided overview. Go with what works best for each group.

Participants may have identified a challenging space, or you can focus on the bathroom and the

activity of washing up.

Spaces for activities can be optimized as caregivers become more flexible in terms of thinking

about where activities can take place:

Is this the place where this task usually occurs?

Is this a comfort spot or a trouble spot for the person?

Has the place been set up to make it easy to do the task?

Is there is anything about getting to the place that may produce discomfort in the individual?

Are there effective stimuli in the environment?

Is the transitional space in any way producing agitation or serving as a distraction?

Do they have to go past unused spaces to get to the place and, if so, do these spaces have any

“meaning” for the person that may agitate or distract?


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Once in the space, are there distractions (unnecessary noises, mirror, etc.)?

How is lighting and temperature?

If this is a trouble spot, can the task be done elsewhere?

Let participants know that scanning (and, where appropriate, making changes in) the

environment of care will be part of the “Try it Out” home exercise this coming week.

Safety

During task performance

Within the general environment

General safety concerns

Safety

Safety was mentioned in the original Savvy series, but now safety issues are likely more

significant. It is more important than ever to scour the environment for safety hazards (clutter,

inadequate lighting, sharp or hot items...) and to remove them; this then becomes the new

environment within which behavior is guided.

The environment should minimize the risk of wandering. If the person paces, is there a safe and

accessible place for that, both indoors and out? Would the caregiver be alerted if an exit door

was opened? If there are stairs in the house and there is uncertainty about the person’s ability to

navigate them safely, are they adequately blocked?

What are acceptable and unacceptable risks and what resources can the caregiver access to make

decisions about these risks? Give out Home Safety handout. Encourage participants to look into

Safe Return, GPS technology, and to notify local emergency personnel that their person has

dementia.

Savvy Concepts

As a trainer, it is useful to consider how all the various models fit together. Savvy Caregiver

teaches caregivers about many models of behavior. In Savvy 1, models form a framework to think

about behavior and structure activities. In Savvy 2, we have the opportunity to start with the

basic Savvy models, add to them and then pull all the threads together into a tapestry of behavior

guidance.

The ABC model was covered in Savvy 1 but it is central in Savvy 2. Many of the models we use

support the ABC model. The heart of the ABC model is the antecedent, which is something to

address in order to support behavior, as well as something to reflect on when things go off track.


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As you teach Savvy 2, and especially as you walk through the Problem Solving Process in each

session, continue to use the ABC model as an anchor for the other models.

Consider how all the models we reference provide a way to evaluate antecedents:

Background factors

Current factors

Comfort spots/trouble spots – the environment of behavior

The Anchors of Contented Involvement (likes / dislikes; skills)

Person-Others-Surroundings

Structure and support strategies

The caregiver him/herself

The Assessment step of the Problem Solving Process offers an opportunity to consider all these

pieces which need to be considered to some extent in order to determine the meaning behind

behavior and to select strategies for responding. Although caregivers are not expected to walk

through all these models each time, our goal is to familiarize them with all of them in order to

offer as many helpful tools as possible.

Along with raising their awareness of the many factors that act as antecedents, encourage

caregivers to focus on the elements they have the most power to change: Current factors,

structure and support strategies, the environment, and their own approach to a task can all be

adjusted to guide behavior.

Problem Solving Process (overview) (20 minutes)

Found in caregiver manual pages 16-20

As a framework to pull all these models together, we will use the Problem Solving Process, a basic

model used by nurses and other healthcare professionals. This is a cyclical framework in which an

assessment-based plan is put into action and then reviewed, providing more information about

the situation. This information contributes to the next assessment and a revised plan – and so


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on. This is the final new strategy we will be incorporating but it is the one that allows us to pull

all the other pieces together. Be sure to mention where models enhance each other as you walk

through this process model. For example, thinking about Background Factors (from the Need-

Driven Model) that might contribute to an unexpected behavior is a form of assessment; so too is

thinking about “trouble spots,” as is done in the environmental model.

Unexpected and troubling behaviors, as well as contented involvement, occur within the context

of activities that include set up, assistance, communication, guidance, and reinforcement. It’s up

to the caregiver to guide behavior and to maintain / re-establish contented involvement on an

ongoing basis. We are considering behavior from many angles because it is seldom a single event.

It’s up to the caregiver to maintain or alter the context to guide behavior. All the models offer

frameworks for looking at the root of behavior and adjusting for it.

Problem Solving Process

This model is just another component of the caregiver’s toolbox. The intent, in providing them

with instruction in the model, is for participants to keep it in mind as a way of approaching

caregiving situations in general. Again, they only need to utilize a model if it resonates for them

and if they find it useful.

Here we more fully describe the pattern of the Problem Solving Process model. This framework

may be used to design caregiving strategies. Start with an overview of the process model step by

step:

Assess: Examine the situation. Determine what is happening. Consider what might have

produced the situation. Be very specific. Adopt a clinical outlook; step back.

Plan: Make a plan of action, based on the assessment including what they know about their

person and what they think is going on in the situation.

Implement: Follow the plan of action as carefully as possible, and make note of how things

go. Be flexible here. Make notes.


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Evaluate: How did it go? If successful, try to understand why it worked and repeat this. If

there are problems, or it just didn’t work, examine what happened. When did it break down?

Was there some trigger? Some point of resistance? If so, what? Use all these observations

in the “Assess” and Plan” portions of the next cycle of the Problem-Solving Process.

Now, walk through each step in the process using the example of developing a strategy for

getting dressed. This will help clarify how the process works. We will focus each week on one

activity of daily living (ADL). Remind them again what ADL stands for and what they are.

Step 1: Assess

Assessment involves standing back and producing as detailed a description as possible of what

has happened in prior dressing activities, especially those that became challenging and those that

went smoothly. This means moving past a caregiver’s own reaction to the situation and moving

past putting a label or a motive on it and looking as carefully and dispassionately as possible at

the action itself. “What happened?” rather than “why did it happen?”

For example, if a participant cites a challenging experience when the person would not get

dressed, it is not enough to leave it at: “She just refused; she was being stubborn.” This labels the

behavior. From the perspective of assessment, the fact that the person would not participate in a

task associated with dressing is just the beginning. What, exactly, was the task? Was it to follow

an instruction to get dressed? Was it to cooperate at all with dressing? Was it that the task was

begun but stopped in the middle? When the task started, what happened? What did the person

do? Just exactly what did happen? Once the “exactly” part is established, the next question is

what was happening just before the task started to go awry? Did the person already seem out of

sorts or uncomfortable? Or was there an “external antecedent,”? How did the caregiver approach

the person? How was the caregiver feeling? Was the person engaged in something else and

initiating this task was an interruption? Was something else going on in the environment?


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Was the design of the task itself a problematic antecedent? Was it too demanding, given where

the person is in the disease or how they were feeling at the time?

Is this an essential task? If it is not, might it be eliminated? Or might the task be structured so

the person can be successfully engaged in just part of the task?

Encourage participants to consider: antecedents and behaviors based on ABC; background and

current factors; person-others-surroundings; progressively lowered stress threshold.

An important point to make regarding a person’s behavior in all tasks and activities is that disease

progression is always a factor that needs to be considered. Has the disease progressed so that a

task or activity that used to fit the person’s abilities no longer does? Participants may need to

revisit the Allen levels and where they think their person currently fits. Again, refer back to the

original Savvy Caregiver manual for this information, and encourage participants to go back to the

overview of the Allen levels each time their person’s abilities seem to change.

Step 2: Plan

Now participants can prepare for how they want things to go as they plan the dressing activity.

First they need to address any issues that arose as part of the assessment step. Be sure internal

antecedents are addressed prior to beginning the task (hunger, thirst, fatigue, pain).

Then they need to think about how well the task fits the person in terms of their current

dementia stage. Should the task be simplified? Should different kinds of set up and support be

tried? Is the task being done in the right place? Are there things about the environment possibly

interfering? And can these be changed?

As participants consider their strategy, it is relevant to ask whether the task design respects the

person’s remaining abilities to act independently – or whether it represents an infringement on

existing capacities (where too much is being taken away). Are there any safety concerns? Are

there overlearned or familiar behaviors you can tap into for success?


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As an external antecedent, is the caregiver clear about how much time this task is likely to take?

Not understanding this can lead to impatience, a signal the person will almost certainly pick up.

Just what will the caregiver say and/or do to initiate the task? If there is a verbal cue, will it “fit”

the person’s ability to understand it? What kind of visual cue might work well?

Step 3: Implement

The implementation step entails carrying out the plan – but being ready to alter it, in mid-course,

if need be. This is not an exercise in rigidity. If the plan starts to break down in places, encourage

participants to make changes that seem to fit the moment. As caregivers they are likely familiar

with needing to be flexible.

What is important is for them to have an idea, going in, about what kind of behavior they are

seeking. What are the caregiver’s expectations about how the task will go and what the person

will be like as they go through and complete the task? What do they most want to accomplish?

Caregivers will need to be very observant about what is working and what is not working, and

what alternatives are tried and how they work. At the same time, if alternatives are tried, how

does the person seem to be responding to them? It is very possible that setting a plan in motion

is just a way for the caregiver and the person to work out a better plan.

A good outcome is achieving some level of cooperation and participation, and some evidence

that the task is proceeding comfortably, without agitation or resistance.


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Step 4: Evaluate

This final step provides the information needed to start the assessment process again. This is the

“How did it go?” and “What did I learn?” step.

If the plan went well, encourage participants to reflect on the implementation process in order to

examine more closely their own actions, behaviors, and emotional tone and the person’s

responses and specific behaviors. This helps to develop a better sense of what worked.

If things didn’t go exactly as planned, how did the person behave? What did they seem to be

communicating? What did that behavior mean? Is it possible to match previously mentioned, or

perhaps previously unnoticed, antecedents to difficulties that cropped up in implementation?

Remind them again of the ABC model and to look back to what happened just before things went

off course.

If the caregiver had to make adjustments during implementation, what were they and how did

they work? What seemed to work; what seemed not to work? Were they able to monitor their

own behavior while improvising? And how did their person react? Any and all information

gathered feeds back into the next step of assessment again. The cycle begins anew with

everything learned from this process.

If, as a trainer, you would like to read additional tips specific to dressing, information is available

from NIA at

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_groomi

ng_and_dressing_0.pdf and from the Alzheimer’s Association at

http://www.alz.org/care/alzheimers-dementia-dressing.asp#dressing

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_grooming_and_dressing_0.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_grooming_and_dressing_0.pdf

http://www.alz.org/care/alzheimers-dementia-dressing.asp#dressing


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The Impact of

Caregiving on the

Caregiver

The Impact of Caregiving on the Caregiver (25 minutes)


This is a final group exercise to help participants start to see the toll their current caregiving is

taking on them.

Caregiving Challenges

What is the most difficult challenge you face

right now in taking care of your person?


Pass around the Caregiving Challenges worksheet. Ask them to work on the first question, listing

what are the greatest challenges they are facing in their caregiving at this point. Give them 2-3

minutes to make some notes. Mention that they will be invited to continue to work on this

handout throughout the 4 weeks.

Prepare a FLIP CHART page beforehand where you can list challenges. Add three columns on the

right to list the three core themes of the program: difficult behavior; resources; practical and

emotional challenges. Hold on to this flip chart page. Display it each week so people may add to

it. This list will be used again in session 4. Similar exercises take place in subsequent sessions,

looking at longer term challenges. The following is one way to design your flip chart, with

examples:

CHALLENGE

BEHAVIORAL

RESOURCES

PRACTICAL OR EMOTIONAL CHALLENGES

Caregiver needs a break x x

Person says inappropriate things x x

Person refusing to shower x x

Ask participants to share some of their challenges. Encourage them to add more to the master list

as they continue to think about this, or if they hear someone else say one that resonates for


33

them. Put all responses on the flip chart and check off which category best describes it. Some will

fit into more than one, which is fine. The important thing is to acknowledge how many of these

challenges fit into the themes of the program. Typically, they all will. If a challenge arises that is

not addressed in the program, offer a resource or an individual conversation outside of class time

to discuss this.

Quadrant

Review the feelings grid, reminding them that all feelings fit somewhere on the quadrant based

on negative/positive and how powerful or powerless they feel.

Steps to Change

Remind them again of the two step strategy to help move them from the lower left corner. Now

there are two additional steps. One is the arrow along the central vertical line of the grid. This

identifies the process of implementing a plan. This constitutes a shift from a powerless to

powerful quadrant, regardless of the outcome. This is why the associated arrow is directly on the

Powerless-Powerful axis but not on either side of the negative-positive axis. Just doing

something is an expression of empowerment, a significant thing in itself.


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The second difference is the addition of the notion of Self-Advocacy to the slide. This, too,

represents a shift in the direction of being empowered, so it constitutes an upward movement on

the grid. Advocating for oneself goes beyond asking for help. It means recognizing one’s abilities

and limits, and communicating one’s own needs in order to get the support that caregiving

requires. This empowers caregivers to get their needs met and avoid burnout, an important part

of self-care.

More Grid

Now we go back to the list of challenges generated by the participants. Work your way down the

list, and ask participants how those challenges make them feel, and where on the quadrant those

would land. You may use yellow post-it notes to place them, write them in or just do this verbally.

Chances are many will end up in the bottom left corner.

Point out that these challenges DO impact how caregivers feel. The good news is, participating in

training is form of empowerment, and will help move them on the grid.

The planning strategy just covered, and the “Try it Out” exercise will also create a more powerful,

positive feeling. The more participants learn about creating a better fit with their person, the

more success they will have, and the more positive and powerful feelings they will experience.

This creates the self-efficacy we are striving for.


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Try It Out (5 minutes)

Trying the strategies discussed at home will encourage confidence.

Subsequent sessions will start with follow up on what participants tried, how it went and

what they learned (just like Savvy 1).

Continue with the “challenge” exercise: Are there additional current problems?

Use the Savvy tools, the ABC model, the Need Driven Model and the problem solving process,

and include a full scan of the environment:

o Assess one caregiving challenge in the area of the person’s behavior

o Develop and try out a plan to guide and structure the person’s behavior in this

challenging area


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Session 2

Materials needed:

Flip chart

Plain paper, colored pencils

Slide handouts

My Caregiving Team worksheet

Guiding a Task worksheet

This session continues the program’s focus on the three main themes of behavior guidance,

strengthening resources for caregiving, and preparing for and dealing with the practical and

emotional challenges in the present and future.

We continue the focus on behavior guidance and re-establishment of calm through the “How Did

it Go?” session and an exercise that uses the problem solving process to walk through managing

an ADL.

How did it go? (30 minutes)

This part of the session is meant to reinforce and develop caregiving self-efficacy. In this case,

what is being reinforced is competence in making practical use of various models taught last

session and previously in the original Savvy Caregiver. Sharing of both successful and not so

successful efforts to put strategies into action builds self-efficacy. This is your first chance to

check in with caregivers to be sure they understand the models introduced in session one, and to

discuss how they are utilizing them. If something is unclear, offer a brief review. If anyone is

willing to offer a description of their attempts, see if you can break their story down into steps we

have discussed: background and current factors; scan of the environment and the role of the

environment on behavior; ABC model; structure and support; assess-plan-implement-evaluate.


37

Remind them they aren’t expected to utilize each model every time they strategize. Guide the

discussion to encourage them to consider all aspects of their process.

Be sure to post the list of current challenges from week one. Ask if anyone would like to add to

this list after having some time to think about it.

Session 2 Overview: This session will introduce the notion of a “care team,” and gets participants

started on a process of mapping out what their team looks like. The care team exercise helps

participants to consider where members of their team are helpful and where they need

additional or different support. We will refer back to the OOVL model to guide participants in

decisions about their care team. We will also examine another ADL (preparing / sharing a meal)

using the problem solving process and other models.

Who’s on My

Caregiving Team?

Who’s on My Caregiving Team? (20 minutes)

Found in caregiver manual pages 27-30

This segment introduces participants to the third key theme of the workshop: the care team, the

informal and formal resources that can help with their caregiving. This segment starts with a

guided imagery exercise. A detailed description follows. It includes ONE way to take the results of

the guided image and put them down on paper, to create a “picture” the care team. What is

important is that participants start to consider and engage with the question of the kind of help

they need and are getting, and how to improve that situation. It is not important that they use

the device we give them to do so.


38

The purpose of the map exercise is to give participants a way to think about and create some kind

of representation of their team of support. As part of the overall problem-solving approach of

the program, participants need to develop a realistic assessment of how their family-friend-

service system is or isn’t working for them. Over the course of the program, we’ll be asking them

to take some action to make the resource map more aligned with their current reality and more

supportive of what they have committed to doing.

The exercise begins with a guided image that aims to help participants to name the people and

organizations that are currently in their caregiving network. Begin by asking them to paint a

picture of their caregiving world in their mind. You may have them imagine themselves as artists,

drawing or painting their caregiving worlds. You may want to hand out plain paper and colored

pencils ahead of time and invite participants to jot down their thoughts after the guided image

exercise.

Suggest that participants get comfortable in their seats and they might want to close their eyes.

Then talk them through the following exercise, encouraging them to really imagine and envision

their caregiving world:

Think about you and the person with dementia; think about the connection between you, the

linkage you feel both in terms of your relationship and in terms of the work and tasks you do

to take care of him/her.

Now, think about a large space, maybe a big flip chart or a drawing tablet. And, thinking about

the connection between you and the person, put the two of you in the middle of that space.

Imagine writing or drawing the two of you in a way that shows the strength and closeness of

the connection and the kind of importance that connection represents in comparison to all of

the other connections in your life right now.

If it is helpful to think more three dimensionally, start by thinking about yourself with your

person standing in a big room, adjacent to each other. How close are you?

Now, think about other people who are close to you (friends, relatives, neighbors, etc.) and

groups (faith community, club, doctor, etc.) in your life, or your person’s, and who are helpful

in caregiving. Who else is close to you or the person? Are there others who are involved in a

big way right now? Imagine drawing anyone like this into your picture, putting them in

relation to you and your person. How close would you put them? How big would you

represent them? As you’re doing this, think about what help these people or groups provide.

If you are picturing yourself in a room, where are these helpers? Are they next to you? Or

across the room? Or out in the hall? How might you express this on paper?


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Are there other people or groups who are helpfully involved with you or the person,

somewhat importantly but maybe not as intensely as the first group? How would you write

or draw them in on your picture? Think about what help they provide.

Are there other groups or people who play small, helpful roles? How would you draw them in

your picture? How close; how big? Think, too, about what help they provide.

Now think whether there are people or groups who are in the picture of your caregiving life

but who are not only not helping but who actually make demands on you and drain your

energies? Who are they? Are they distant or close? What kinds of demands do they make

on you?

How might you draw these people in your picture? Where might they be in the room with

you? Are they next to you pulling on your arm? Out in the hall calling to you?

Next, think about people or groups who could provide more caregiving help. You may have

already drawn them in, but you know they could do more. How might you draw these people

or groups in your picture? What more do you think they could do?

Open this up for discussion, reminding people to go ahead and draw some ideas. How are people

“seeing” this? What images did they create? Ask them about their helpers, and about those who

are not helping. Did anyone include professional helpers? Doctors’ offices? Are they able to

identify areas where they would like the care team to be different?

Be sure participants understand that this is a work in progress. It is a way to visualize a larger

circle of help around them. Over the next 2 sessions we will look more at what resources are

available and how to access them. This information will help create a care team map that

addresses future care needs as they look ahead. Let them know we will continue to revisit this

map in later sessions.

Sample Drawings

Walk through the sample maps, detailing how this example demonstrates who is close, who is

helping, who is draining, and where changes can be made. Emphasize this is just one possible

approach to creating a caregiving team map. Theirs may look very different, but it is intended to

be a way of describing the instrumental and emotional world in which they are carrying out their

caregiving.


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In the example above, the major relationship is between the caregiver and care recipient. The

daughter is an important part of the picture and is close to the dyad. A nephew is also an

important part of the picture, but more distant. Others – like the brother, church, neighbors, etc.

– are part of the picture, but not as important and not as close as the daughter. Point out that the

both the size and placement of each person on this “map” offers information about their

relationship to the caregiver / care recipient dyad.

Here the strength and direction of energy for all the care team members are portrayed. The

daughter and brother are portrayed as being the strongest supporter, and the nephew is seen as

a big drag. Note that the old friends and church both help (a little) but also make demands.


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As a result of thinking about how to improve the care team, a new element has entered the

picture above - formal services. Also, a decision has been made to reduce the drag from the

nephew and from the church, indicated by a change in arrow size and/or direction. More help is

being sought from the doctor and neighbors, and a choice has been made to be less involved with

old friends. Participants can use their drawing to reflect changes as they occur, or to help them

define what kinds of changes in their care team they need to make in order to better meet their

needs.

Strengthening the

Care Team

Through Decision Making

and Communication

Strengthening the Care Team (25 minutes)

This opens up the process for discussion. Guide participants through a review of who they see as

their supports, and who they see as being a drain. Ask if anyone would like to offer an example of

where they would most like to make an adjustment. Once people acknowledge that they have

something they would like to change, move on to the following exercises that demonstrate

options regarding how to do that.


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My Caregiving Team Worksheet

Hand out this worksheet. Refer back to list of Current Challenges as a starting point for identifying

tasks that could be handed over to someone else. Suggest that they consider all the things they

do on a regular basis, and which of those tasks they would most like to have help with or hand

over entirely. Then, suggest they refer back to the care team map. Who might they tap into for

assistance? These steps build on the development of the map, and encourage them to continue

to refine it. Plant the idea of how to ask, and assure them we will talk about that too.

Decision regarding a draining team member

Walk through an example of using the Options-Outcomes-Values-Likelihood (OOVL) grid to look

at the options one might consider for changing how a caregiver interacts with someone who is

draining their energy. This offers a refresher of the OOVL. Frame this as just one example, but

encourage them to make use of the OOVL if it helps. Decisions like this might involve creating

distance from a person who is in the caregiver’s life but who is a drain on the caregiver’s

energies. Or it might entail attempting to strengthen the support provided by one element of the

team. This process may help them to reconfigure their caregiving terrain to make it more

supportive for them. Once they visualize how things could change they have a better chance of

actually making a change.


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If there is time, you can use a prepared OOVL on a flip chart to have participants walk through

either a real situation or a theoretical example.

Decision regarding community obligations

Most caregivers at this point in their caregiving career have little time or freedom to participate

in extracurricular activities. Someone in the group may have an example of having already limited

their community obligations. Ask if anyone in the group would like to use a situation they have

experienced, or walk through the one given. Again, this is just an example of one scenario.

Communication

to Strengthen the

Care Team

Communication to Strengthen the Care Team

So far we have looked at the people and resources that are in the caregiver’s environment of

care. We have started to consider tasks they might want some help with and we have looked at

how to make adjustments to the care team to better support the caregiver. Now it’s time to

consider how to set up a helper for success and how to ask.

We will be building on these key points to build the helper’s self-efficacy and increase the

likelihood things will go well and they will want to help again: choose the right task; provide

detailed instructions; set them up with appropriate expectations and goals; and offer strategies

to defuse agitation. The question is how to communicate this information. The following slides

from Savvy may create a basic framework for this.


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Progressive Decline

One approach here is to ask participants if they would like to summarize what is meant by this

slide. Be sure they capture the idea that their person is less able to guide their own behavior, so it

is incumbent upon the helper to take control of guiding behavior. What the caregiver does and

how the environment is structured will be the driving force behind their person’s behavior.

Anchors of Contented Involvement

Again, if you ask, someone may be willing to explain this graphic. Otherwise summarize how to

create contented involvement: tap into things the person likes; set it up in a way that will

encourage success; and provide appropriate support, cues and reminders. This is good fit.

Remind them how much they know, and how important it is for helpers to have some sense of

this. An outline offered to a helper regarding what works and what doesn’t work regarding fit,

structure and support is more likely to lead to a successful experience for everyone.


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Threats to Contented Involvement

This reminds participants about the importance of communicating that their person has a very

small window of feeling comfortably involved. Becoming agitated in any way is an indication that

the helper needs to change what they are doing. Caregivers can offer useful tips about how to

keep their person in the comfort zone.

Also, it’s important for helpers to understand that engagement is what is important here, not the

outcome of the activity itself. There are many ways to stay engaged and be involved, both

actively and passively. Being passively contentedly involved may be as simple as being

comfortable – also a reasonable goal of care.

Recruiting Help

What works?

What doesn’t work?

Why do some things work better?

Recruiting Help

Use a FLIP CHART to list examples of how to enlist help. Ask if anyone has a strategy that has

been successful, or if they have ever been asked by anyone else in a way that made it easy for

them to help. Make this a list of “Best Practices” for soliciting help. Open this to discussion. What

might make some strategies work better than others?

Once you have a list, provide a brief summary. To set a helper up for success, provide clear and

detailed instructions, including:

The helper is responsible for guiding the person’s actions

The task needs to be carefully designed to fit the person’s abilities


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The structure and support strategies must be matched to the person’s abilities

Accuracy and quality of performance are not important

What is important is that the person is content while doing the task and is occupied by it, or is

just comfortable being there while a task is being performed

Also, list some strategies for redirecting the person to the task, should s/he become bored or

distracted

Guiding Behavior in

Activities of Daily Living

(ADLs)

Guiding an ADL (30 minutes)


Although we will be looking at examples having to do with ADLs, the models can be used to guide

behavior in other activities as well. Once again, specify that ADL stands for activities of daily

living, such as bathing, eating, dressing, toileting and transferring. Also mention that examples we

use in class may not be challenges for them right now, but they may be at some point and the

process can be applied to any activity.

Guiding a Task: First review the Guiding a Task chart handout. Explain that this will be part of the

Try It Out, and that this chart is useful for thinking through a task, but even more so for setting up

a helper to be successful in doing a task with their person. Refer back to this chart as you walk

through this session’s task of making a meal and sharing it with the person with dementia.

Connect the items on the chart with their Savvy foundation:

Need Driven Model for background and current factors


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The Environment of Behavior

Anchors of Contented Involvement for skills and interests

Structure and Support handouts for communication and problem solving strategies

Review the next slide to sum up the potential uses for all the models within the framework of the

Problem Solving Process, and then come back to this chart to walk through guiding the task.

Guiding an ADL / Problem Solving Process

This is a group exercise. Use the Problem Solving Process to ask the group to plan out strategies

for guiding the person through one activity of daily living. Today we will focus on making a meal

with the person and sharing it. If this is not appropriate given the people in the group, focus on

keeping someone engaged while making a meal, or simply sharing a meal with the person. This

part of the session requires some flexibility and thinking on one’s feet. Touch on the Need Driven

Model to identify and solve potential problems and link this to the ABC model of behavior. Both

focus on antecedents to behavior.

Ask participants if they can describe something they see as a troubling or disturbing behavior for

this scenario. It is important to get them to narrow down from a broad or vague interpretation of

what happened (“he wouldn’t eat” or “she yells”) to the more precise and specific description of

what happened (“I put down his plate and he got up and walked away;” or “She fussed when I

said it was time to eat, but then she yelled at me when I told her to come to the table.”).

Next, have them either state the actual antecedents or imagine them, including possible

environmental antecedents. In addition to looking at the specific antecedents, ask participants to

think about the behavior in terms of the possible needs the behavior may have been expressing.

Then as they go through the Plan and Implement steps of the process, they should be able to


48

state what they will be looking for to determine if the selected strategy is getting them where

they want to go.

ASSESS

Start with a stage somewhere in the middle of the group if possible and establish that as the

target for the planning involved in this exercise.

Establish clear goals: a peaceful meal, no confusion or agitation, pleasant for both.

Walk through with the group, following the outline on the chart. Caregivers may use this

chart to plan a task as part of this week’s “Try It Out”.

The chart handout may be used to provide helpful information to a helper.

Imagine some skills and interests that the care recipient may have that will be useful for the

helper to know.

Consider the Need-Driven Model. What background factors may play a role in this task? Include

likes and dislikes; mobility and sensory issues; rituals and habit. What are the current factors?

Focus on stage of dementia first. Also consider appropriate setup and guidance, and the daily

routine involved.

PLAN

Begin to work through all steps in the chart handout. Use the rows to create structure and

support for the help that will be provided.

ABC model factors:

Establish what antecedents need to be in place in order to get started and support behavior

o Comfortable seat, toileting done

This also takes into account the environment and its influences

o Remember the environment as an antecedent

o Comfort, discomfort; also comfort items may help

o Chaos, distractions, loud music / conversation in background

What kind of communication will work well with the person (verbal, visual, tactile, some

combination) to get the person started? Be sure they indicate how directive they need to be

(support).

How should the meal be set up? And where should it be?


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What kind of cues work to get the person started in helping with meal preparation and / or

getting the person to eat a meal?

IMPLEMENT

Once the meal has begun:

o What special structuring or cuing may help?

o Once their person has begun eating, does one form of communication work better

than others?

o How much assistance is needed?

o Cutting, feeding, clean up?

What happens if their person becomes distracted? What communication, structure, and support

strategies work? What tips or tricks can the caregiver share?

EVALUATE

The last row of the chart provides the caregiver with a way to get feedback from the helper on

how things went, and it is set up in a way that lets the caregiver and helper brainstorm about

how to make the event even better next time. Again, the goal is for this person to want to come

back, so what is needed to make it work even better? Review the Problem Solving Process model

again to demonstrate how the process flows into a new cycle starting with Plan.

If, as a trainer, you would like to read specific tips for eating and meal preparation, information is

available from NIA at

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_daily_a

ctivities_0.pdf, and

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_healthy

_eating.pdf, and from the Alzheimer’s Association at http://www.alz.org/care/alzheimers-food-

eating.asp.


There are 4 main areas to focus on: Behavior Guidance; Strengthening the Care Team;

Preparation for the Future; and Self-Care

Be sure everyone has structure and support strategy handouts from Savvy Caregiver 1,

session 5; bring extras just in case they don’t.

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_daily_activities_0.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_daily_activities_0.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_healthy_eating.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_healthy_eating.pdf

http://www.alz.org/care/alzheimers-food-eating.asp

http://www.alz.org/care/alzheimers-food-eating.asp


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Behavior Guidance

Try out ADL behavior guidance based on the models.

Continue to focus on behaviors.

Identify a persistent behavioral challenge not associated with ADLs and develop a plan to re-

establish calm.

Identify any pattern of distraction from tasks or activities; conduct close analysis of distraction

antecedents; formulate and test behavior re-establishment strategies.

Strengthen the Care Team

Make and implement communication strategies and/or key decision choices about at least

one part of the team in an effort to improve the situation.

Are there resource needs not met by the current team?

Identify a person or organization you will ask for help.

Work out a plan for asking for help and do so.


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Preparation for the future

Consider long-term challenges and identify key decisions that will need to be made. We will

discuss this next session.

Self care

Identify one caregiving area associated with emotional distress and deliberately make a move

to shift this into something more satisfying.

Before ending class, you may want to take the opportunity to forewarn people that the next

session will include talking about some difficult subjects: grief, loss, later stage care and end of

life. These topics are tough to explore but our goal, as always, is to help inform and empower the

caregivers. This minimizes the chances that they will feel unprepared later, when they may have

to make hard choices.


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Session Three

Materials needed:

Two flip chart pages for future challenges (see suggested format below)

Slide handout

Ongoing Loss: Ideas that May Help handout

Internet Resources / Free Internet Tools for Caregiver Communication handout

OOVL Decision-Making Tool handout

Legal and Financial Planning for People with Alzheimer’s Disease (NIA)

Connections books

Maine Hospice Council flyer about hospice

Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Laurel Coleman)

End of Life: Helping with Comfort and Care booklet (NIA)

Agency on Aging resources: o Agency flyer o Information on living options, LTC assessments o Local resources

Also useful, but optional: o Hospitalization Happens (NIA) o Pain in Dementia (AGS Foundation for Health in Aging)

Folder or sleeve to hold handouts

How Did It Go?

ADL behavior guidance

Care team strengthening

Work on caregiver self-care

How Did It Go? (30 minutes)

Open up discussion with how participants are using the models and strategies taught and

discussed in the first two sessions. Are all the models making sense? What parts are they using?

Ask about trying things out and be sure to help them identify if they are applying the models

where they may not realize it. The point is to draw participants’ attention to being intentional in

using these tools and to learn to assess what happens when they do. Becoming familiar and

feeling comfortable with the models is part of the caregiver self-efficacy development process.

Hearing themselves and others describe successes builds this.


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Ask the group about any efforts to identify resources for help with caregiving, and efforts to then

ask for that help. Participants have much to learn from one another about successfully asking for

and obtaining support. What are the reactions to the caregiving team map exercise? Did people

think more about their team? Did they add any informal or formal resources to the list? Have

they thought more about who is helping and who is not? Did they think about situations in which

improved communication might promote additional help? What changes has anyone made?

Some groups respond more readily to the care team map exercise than others. Ask for feedback,

and if there is confusion, clarify where needed. The exercise is intended to help caregivers

consider all the people who may be available to them both now, and when they need more help

later. Be prepared to offer suggestions to groups that are having difficulty “seeing” this, as well as

to participants who insist there is no one who can help them. The exercise is not meant to create

more stress, or lead anyone to feel pressured to make drastic changes immediately. Remind them

of formal vs. informal resources, and assure them that they will leave this session with more

information about formal resources.

Has anyone identified additional caregiving challenges? What have they done to work on

addressing the feelings associated with caregiving and the challenges ahead? As we continue to

ponder the challenges of caregiving, what are they doing to enhance their own well-being? What

steps are they taking to recognize their feelings, and to move themselves to a more powerful and

positive place on the feelings grid? Acknowledge and congratulate them on any examples of self-

care.

Session 3 Overview

In this session we will be looking at some of the longer term challenges caregivers are likely to

face, and considering some of the factors around later stage care, including sharing some

information about formal resources. As you may have alerted them last week, mention again that

today’s topics may create some discomfort. This exercise of looking at loss and what the future

may hold is all part of self-care. Later, we will work on guiding the ADL of bathing.


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What is the most difficult challenge you

expect to face in taking care of your

person in the next 6 – 12 months?

Identifying Future Challenges (60 minutes)


The main portion of this session focuses on the near and long term challenges in caregiving,

including considering what kinds of decisions will need to be made in later stage care. It may be

helpful to prepare participants up front by pointing out that some of what will be discussed may

be uncomfortable for them. Be clear that talking about later stage care, and the associated

emotions, is not intended to upset them. The goal is to offer participants strategies and

information so they are prepared and better able to deal with these issues, rather than feeling

blind-sided by them. Also suggest someone they may contact outside of class in case anyone

requires more support around these issues. This may be the trainer or someone else.

The start of this exercise is an opportunity to remind participants that dementia is a terminal

illness. Medical providers may not have emphasized this point, and some caregivers may have

had trouble comprehending this earlier on. Gently but clearly emphasize that, unless something

else takes him/her first, dementia will end their person’s life. The further along the journey of

dementia, the more the focus is on their person being comfortable. We will talk more later in this

session about hospice and palliative care. Here you can gently introduce the idea that later stage

care will be about comfort and end of life.

Exercise: Use a flip chart and once again prepare columns displaying the core concepts of the

program: behavioral issues, resources, and emotional/practical challenges. Entitle this one “6-12

month challenges”.

6-12 MONTH CHALLENGES

BEHAVIORAL

RESOURCES

PRACTICAL OR

EMOTIONAL

CHALLENGES

Caregiver will need more break time x x

Person may become incontinent x

Person could start to wander x x x


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Participants may react by saying, how could I possibly know what the next year will be like?

Reassure them, this is not exact; no one really knows. But based on the changes they’ve seen in

the past 6-12 months, what do they think it will be like caring for their person a few months in

the future? How much more help might they need? What kind of help? Will they be able to

manage at home? And what kinds of decisions might they need to be making? Give this a little

time so they can really start to consider these questions. Keep a list on the flip chart, marking the

corresponding categories for each. Invite the group to continue to add to this list.

Grid

Once you have a list, move to the feelings quadrant. Use the grid format to help participants look

at the feelings they have about these longer-term challenges. Where would each of them fall?

The exercise should clarify for them that this is an area likely to produce negative and powerless

feelings. It is important to acknowledge and validate this experience. Because they know how

this model works, remind them that “doing something” can move their feelings to more positive

and powerful quadrants.

Encourage them to reflect on the successes they’ve already had in guiding and shaping behavior

and in dealing with other caregiving challenges, showing them that they know how to shift their

feelings to more positive/powerful positions on the grid. In later stage care, doing something that

allows them to see that their person is being comfortable can produce the same positive and

powerful feelings of success. Remind them, too, that we have added the concept of ‘self-

advocacy’ as a tool to move from powerless to more powerful states. Also point out that taking

informed action to assure the kind of end of life they and their person would want will position

them for positive / powerful feelings. As part of making a plan, today they will receive

information about resources that may help in the future.


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Loss and Grief


Here is another spot where the group will be confronted with a difficult topic. Take it slow and

check in from time to time to see how they are doing.

You will offer participants language and categories for a number of feelings that are all under the general heading of grief and loss. Focus on the extent to which participants are already dealing with these feelings. Remind them that these emotions are an important part of their experience. Once again, this isn’t to upset them, but to give them an opportunity to acknowledge and consider their feelings in order to identify support and resources for the future. We will also touch on the notion of “reestablishing” their lives after this career of caregiving has been completed. This is a difficult topic for many. Our purpose in introducing the topic of “reestablishment” is simply to introduce another element of being savvy: that a time will come when life again changes for you dramatically. Some forethought is prudent. Follow the bullet points on the slide to define the different types of grief. There is some overlap in these so take the time to make distinctions. Often caregivers will experience much validation in this.

Ongoing loss: This refers to the series of “little losses” in dementia that happen over time for

both the person with dementia and the caregiver. Although each loss on its own may not

seem big, the cumulative effect is significant.

Anticipatory Grief: Anticipatory grief occurs when a loss is imminent, whether someone is

actively dying or has received a diagnosis that indicates end of life is approaching. It may

create a sense of mourning that lingers throughout the journey of dementia, or it may be

experienced when the end of life is near. Others aren’t able to see this kind of grief, so it is

experienced in isolation.

Ambiguous sense of loss: The loss felt when the person is still physically present, but in all

other ways has changed and often feels absent. Others don’t see this type of grief either.


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Disenfranchised grief: Because others don’t see the ambiguous kind of loss experienced by

caregivers, they can’t be supported or validated. This kind of loss is not socially recognized,

leaving caregivers feeling disenfranchised.

Be sure to make the clear connection between other people not being able to recognize their grief experience and therefore not being supportive. Here is where the self-advocacy piece comes back into play for them. Their sense of loss and grief will remain unacknowledged until they communicate what they are feeling to their caregiving team. Otherwise it remains invisible to others. It may be helpful to suggest that dementia presents a gift of time: time to reconnect, to say what needs to be said, to find closure. It may also be a time to record the person’s memories while they are still somewhat intact. And it’s a chance to deliberately slow down. The extra time it takes for people with dementia to perform tasks often causes frustration for caregivers, but encourage them to make use of this to slow life down in ways that nurture them whenever possible. The grief they experience while caregiving does not diminish the grief they will experience when their person dies. However, there will be a new level of loss and grief after death. They will lose their person, but they may also lose their daily routine, their sense of purpose, and their focus. They may feel they have too much time on their hands. They will also likely feel relieved, and it is crucial that they understand that this is normal and not a reason to feel guilty. Give participants a chance to discuss how all this feels, and what they expect. Touch upon the importance of considering what their lives will look like after caregiving. What will be the new “normal”? Creating some purpose outside of caregiving will help them make the transition later. When discussing the extra challenges created on special occasions (holidays, birthdays, anniversaries) be sure to remind them about role flexibility as discussed in session six of Savvy 1. Families with more role flexibility are more resilient. Remind them, too, that after their person dies there will be new challenges on special occasions, and to not be too surprised at how they may react on those days. It is one more opportunity for good self-care. Throughout this journey, one critical piece of self-care is support. Remind participants to help their care team understand how they are feeling so they can feel validated and supported. Encourage them to seek out support through family, friends, community and support groups.


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Future Challenges Here is where you will use the third and final flip chart with categories, to list 12 months+ challenges. This exercise adds to the other lists of anticipated challenges that the participants began and have continued to develop and refine. Be sure to keep previous “Challenges” flip charts posted for comparison, and to continue to add to those if other thoughts arise.

12+ MONTH CHALLENGES

BEHAVIORAL

RESOURCES

PRACTICAL OR EMOTIONAL CHALLENGES

How will I know it’s time to move him? x x

What will keep her content? x x

Will I be able to keep doing this? x x

The focus of this exercise is: what do they expect to happen as the person’s life comes toward its end? What are the concerns about safety? What kinds of help will they need? How will they maintain self-care? Ask them to think about what their person was like 12 months ago. How different are they now? Then, can they project that level of change into the future and imagine how different it will be? This is the time to ask them to imagine if they will realistically be able to continue to manage their person’s care at home, without extra help?

Later Stage Choices

Care choices Comfort choices Location choices

Later Stage Choices Found in participant manual pages 30-32

Guide the group through some of the choices they may potentially have to make.


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Encourage caregivers to consider initiating conversations with their person’s health care

provider (doctor, nurse practitioner) about choices and wishes with an emphasis on including

their person in conversations and decisions as long as possible. In order to be an effective self-

advocate, the caregiver needs to be a full member of the health care team early on.

Care choices involve thinking about what will be acceptable in terms of diagnostic work-ups,

treatment for other issues, procedures. Which symptoms demand diagnosis? Which

diagnoses demand treatment? Have them consider things from colds to flu to pneumonia to

cancer. What will be appropriate as dementia progresses? Questions to guide them might

include:

o What are the short and long term goals of care?

o What outcome might they reasonably expect?

o How would any choice impact what gives life meaning for the person?

o What is most consistent with their goals?

Comfort choices involve considering the tradeoffs between treatment and comfort. They may

be faced with choices down the road for their person regarding feeding tubes, ventilators,

antibiotics. Persons with dementia may develop infections, get the flu or pneumonia. Should

this happen, caregivers face a decision: treat the condition – and prolong the person’s life or

not – with the possibility that the condition will end the person’s life. More and more, medical

providers are recognizing that comfort can be a more realistic and humane care strategy than

continuing to engage in what may be futile efforts to cure. This approach is palliative care,

which seeks to balance the discomfort that might be involved with treating life-threatening

conditions against a broader concern for keeping a person at ease while the natural processes

of an incurable condition take their course. Have they weighed the risks and benefits of

treatments? Have they thought about how hospice care could support later stage care?

Location choices address where their person would receive the most comprehensive care,

and have their safety and well-being managed in a way that does not drain the caregiver. As

demands increase, how to meet these demands must include consideration of where to best

meet them.

It is critical to remind participants that they are their person’s advocate. They have the right to ask all the questions they need to in order to feel equipped to make the best choices possible. There are certain steps caregivers need to take to be able to be an effective advocate for their person, steps that will allow them to work collaboratively with medical and legal systems. The first step is to obtain Power of Attorney for Health Care which allows caregivers to make decisions about the person’s care. Under some circumstances, they may need to become the person’s guardian and/or conservator. This may vary by state. Ideally, the person should already have a written Advance Directive for health care. At some point, a person with dementia will no longer be considered legally competent to sign such documents. It’s important for caregivers to


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understand that they can use their in depth knowledge of their person to make some very good guesses about the care their person would most want, based on their values and what gives their lives meaning.

Later Stage Decision Making Here is one more chance to open up the discussion to major decisions caregivers will face. Possible areas to include: getting more help; when to choose hospitalization; moving the person to long term care; when to call hospice. Ask them to consider who will be involved in these choices. Have them think about their care team map. Who is likely to want to be involved? Has the person with dementia completed an advance directive? Is there a power of attorney for healthcare? Where might family conflicts present a problem? Briefly define different options: living options (nursing facility (NF), residential care), and care options (Do Not Resuscitate orders (DNR); palliative / hospice care; respite). Be sure they are aware that many facilities have lengthy waiting lists. Don’t wait until they need to make a change. Add names to waiting lists early. If they aren’t ready, they can always say, “no thanks”. Finally, go back to the feelings grid and remind them that thinking about all of this information takes an emotional toll. This is part of ongoing loss. Encourage them to practice good self-care.


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OOVL Walk Through Use the slide with the OOVL to walk through an example of using this tool to make a decision about long term care. Point out that this OOVL demonstrates that sometimes there is no perfect option. This decision making process helps to sort through the conflicting options.

Resources Found in participant manual pages 39-41

Review available resources. Briefly describe and pass around, or make available on a table. There will not be time to go into any of them in depth. This brief break provides a change in energy from the grief conversation to moving on to guiding an ADL. Because multiple resource handouts will be shared, it may be helpful to offer a folder or envelope to contain them. Resource handouts that are part of the Savvy 2 curriculum include:

Connections book

Hospice flyer (Maine Hospice Council / OADS)

Ongoing Loss: Ideas that May Help handout

Internet Resources / Free Internet Tools for Caregiver Communication handout

Alzheimer’s Disease: Care and Support at the End of Life booklet (Dr. Coleman / OADS)

End of Life: Helping with Comfort and Care (NIA)

Legal and Financial Planning for People with Alzheimer’s Disease (NIA)


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Other handouts to make available include:

Agency on Aging brochure

Other local resource information

Living Options in Maine handout

Long term care assessments explanation

Hospitalization Happens booklet (NIA)

Pain in Dementia (AGS)

Guiding Behavior in

Activities of Daily Living

(ADLs)

Guiding Behavior in ADLs (20 minutes) Found in participant manual pages 16-20

Once the resource materials have been shared, draw participants’ attention back to the final topic of the session, walking through a bathing activity using the models. Encourage them to translate this discussion into trying this out at home.

Guiding a Behavior You will be starting out with a brief overview once again of all the models and how they contribute to the Problem Solving Process. The models are just tools for guiding and structuring their person’s behaviors. The core of the diagram is the problem solving process. The text boxes on the left and right represent the importance of the Anchors of Contented Involvement and the contribution of the ABC model and the Need-Driven model, along with the influence of the environment. Although the slide appears quite complex, utilize it to emphasize to participants that they have more tools at their disposal for guiding and structuring behavior.


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For this ADL we will focus on washing and bathing. These are often problems for caregivers of persons in the later stages of the illness, so this will likely tap into some actual issues. This section should be approached as a problem-solving exercise. Ask participants to identify problems they are having or observing in this area. You may use these responses to create a scenario for the problem solving exercise. You won’t be able to address all issues, but you may be able to address a reasonable set of them. Stay aware of time and be cautious to maintain the group focus on walking all the way through the task as opposed to spending too much time on one issue.

Assess If time allows, you may start by asking participants to describe what they have seen as a troubling or disturbing behavior related to bathing. It is important for the caregiver to identify the most precise and specific details of what their person did (“He pulled away” rather than “He refused to bathe”). Initially, identify what happened rather than why it happened. Next, have them brainstorm possible antecedents, and the possible needs the behavior may have been communicating. This slide offers a guide to the things they will need to consider as part of their assessment process. Be sure to remind participants that a good estimate of what stage of dementia their person may currently be in will help them design appropriate support and structure strategies for activities. Walk through the items on the slide with some examples. Use examples from the group if possible, otherwise prepare some of your own. Use this as a way to demonstrate how to think about all possible factors impacting behavior.

Personal history: What has this person’s bathing routine been? Showers or baths? Morning or

evening?

Background factors: Any health conditions that require special care?

Self-management: What are they capable of doing on their own? With some guidance?

Antecedents: How has this gone in the past?


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Cooperation: How much do they do? Is there any resistance?

Comfort and discomfort: How do they express these? How can the caregiver distinguish their

person’s experience, i.e. are they afraid or are they cold?

Reactions: How do they respond to different types of guidance?

Expressed needs: Is the caregiver able to sense this? Is there any comfort or pleasure? Fear or

pain?

Environment of care: Must the activity occur in this place? Are there more comforting

options?

Plan Keeping in mind that even bathing is an opportunity for contented involvement / being comfortable, start with considering what part the person is capable of playing in the task. How much participation may the caregiver reasonably expect? Also, they need to watch for signals from their person: are they ready? Feeling resistant or agitated? Are there parts of the activity that the person enjoys? Walk through the items on the slide to guide the discussion. Offer suggestions for making the task more successful.

The right moment: Do this when it works for them best (when they are rested and relaxed)

whenever possible.

Location: Where is the best place to do this activity?

Modesty and intimacy: Only uncover areas being washed; try to have the person wash their

own sensitive areas. Also, ask the caregiver to consider their own comfort level with this

activity. How can they work through their own discomfort? Is this time to enlist some help?

Strategies and equipment: How do they start? What is the routine? Sponge baths are ok too.

Bath seat? Flexible shower hose? Keep the person from getting chilled. Strive to make the

experience pleasurable for the person. It should be pleasurable for the caregiver as well. It


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can be a gentle moment and if it goes well for the person, the caregiver can take pride in its

accomplishment.

Physical comfort: Older skin is more fragile and sensitive. Consider water temperature and

cleansing materials.

Next steps: Be ready for drying and dressing.

Implement The planning phase includes some consideration of goals and expectations. Remind participants

that these must be adjusted accordingly as dementia progresses. Preventing skin breakdown is

likely to remain a goal throughout the course of dementia, but standards of cleanliness, personal

hygiene and dress may loosen over time. Safety and comfort are always important goals as well

and they may take on more importance than appearance over time. Remind participants to

maintain awareness of the aim of the bathing task.

This is an opportunity to deliberately create antecedents to set up a successful experience. What

cues will they be using and how will they communicate? What’s the emotional message? At this

point the caregiver has considered initiating the plan, guiding the person to the location where

the activity is to take place, the removal of clothing, cleaning and drying the person, the replacing

of briefs and clothing, and guiding the person back to the place where the next activity is to take

place. This step is the “try it and see how it goes”. Encourage them to keep track of their efforts

and how each step goes. If the situation calls for it, they may need to make adjustments during

the task. Remind them to keep track of any changes they make to the plan as well. All this

information is important for the evaluation step.


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Evaluate

Overall, were the goals reached? If not, what fell short? This is the caregivers’ opportunity to

review each step of the task.

Were there parts of the process in which the person was cooperative and comfortable? What

were the antecedents of these parts? What approaches were used? Overall, did the activity seem

to fit the person’s abilities? Encourage them to make note of what went well so they can identify

what made it go well (antecedents and strategies) and then reproduce this in other activities.

If there were parts during which the person was uncomfortable or uncooperative, what did the

caregiver do to restore calm? Were there any unexpected events? If any difficulties were

encountered, in terms of the person’s behavior, what might have been their meaning? What

might they have been communicating?

What are the main things learned from evaluating the task that will go into the next assessment

phase to alter the plan?

If, as a trainer, you would like to read more specific tips about bathing, information is available

from NIA at

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_bathing

_0.pdf and from the Alzheimer’s Association at http://www.alz.org/care/alzheimers-dementia-

bathing.asp.

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_bathing_0.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_bathing_0.pdf

http://www.alz.org/care/alzheimers-dementia-bathing.asp

http://www.alz.org/care/alzheimers-dementia-bathing.asp


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Continue to encourage participants to tap into all the models reviewed as part of the problem

solving process to approach an activity or ADL. This will be the final opportunity to try things and

return to class with feedback. Remind them that the models are all tools for them to use as they

deem best in their own situation. They are not expected to use them all, but trying something

new may lead to insights.

Remind them to continue to address their caregiving map, available resources and self-care.


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Session Four

Materials needed:

All three “Challenges” flip chart lists

Slide handout

Class evaluations

Certificates

How Did It Go?

Preparing for the expected and the unexpected

Using the models to guide challenging

behaviors

How Did It Go? (30 minutes)

This is the final time to check in with participants regarding all the key themes of the program.

Starting with the topics from the last session, start with some open ended questions about later

stage care. How has their thinking changed about end of life care? What steps have they taken to

identify resources to help? What adjustments are they considering making to their care team,

and who have they asked for help? What plans have they started to make based on last week’s

talk about later stage decision making and finding resources?

Also ask about how it went this week with behavior guidance. With the models as a framework,

see if participants made attempts to guide an activity or defuse an unexpected behavior.

Reinforce any descriptions of efforts, pointing out where different models were utilized and

where lessons were learned. Ask about what worked and what didn’t, and how they will make

adjustments next time. What have they noticed regarding the impact of the environment on

behavior? Draw participants’ attention to being intentional in using the Savvy Caregiver tools and

to assessing what happens when they do. Build their self-confidence and self-efficacy by

emphasizing any new learning they are demonstrating and any positive changes they are making.


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Session 4

Guiding behavior

Strengthening the care team

Self-care

Wrap-up

Session 4 Overview

Offer a brief overview of the topics to be covered in this session.

Guiding ADLs

Guiding ADLs (30 minutes)


This topic slide is just an introduction. In this session you will be using the Problem Solving

Process to walk through assisting with toileting. Depending on the group, this may or may not be

an activity that people are helping with at this point. It is up to each trainer to determine if there

is a different ADL activity that the group would find more beneficial to problem-solve. In most

cases, toileting is a task that everyone will eventually need to cope with, and because of its

challenging nature, addressing it at this time may be especially helpful for future planning. Some

of the suggestions you will be incorporating can be helpful in preventing future problems, so the

group may wish to approach this activity with that in mind.

If you choose to address a different activity, be prepared to work around the discussion notes as

they are focused on toileting.


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Remind participants of the process model and how all the other models feed into it. You may

want to refer back to this slide during the guiding an ADL discussion.

Assess

This ADL activity is likely to be a sensitive topic. By this stage of the disease, it is probably the case

that many care recipients are having at least occasional incontinence.

In the first portion of the exercise, ask people to consider where they are with this task. The

exercise begins with brainstorming about what they all see when they try to help their person

with various components of toileting. For some, they may only need to remind or cue their

person to go and use the bathroom. Naturally, most will have unique and individual experiences,

but you can ask them to estimate at what stage of the disease their person is and to describe

briefly (and perhaps for just one or two participants) how they structure and support the activity.

Remind them that a key part of the assessment is to describe what they see - what actually

happens, before considering what it means. The points on the slide may help to focus this

description. For those who are not yet dealing with toileting issues, suggest they consider their

concerns and how they anticipate both they and their person may react. This will stimulate their

thinking.

The assessment should provide information about the kinds of cooperation and reactions the

caregiver can anticipate in implementing the plan. Review each item on the slide. Ask for

suggestions from the group about how to consider each item. Be ready to offer examples to help

clarify.

Fit: Consider person’s stage, and caregiver’s expectations.

Self-management: Determine what the person is able to do for themselves. Watch for cues.


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Cooperation: The person with dementia is communicating something through their level of

cooperation or resistance. Notice their responses.

Comfort and discomfort: How do participants typically recognize discomfort in their person?

How are these sensations expressed? Mention the fragility of older skin and the importance

of using appropriate cleansing products and methods.

Reactions: What kinds of reactions have people seen, and how do they interpret them? Refer

back to personal history as a possible background factor.

Environment: Remind participants about the environment of behavior. Consider all the ways

the environment might impact this task: room colors, contrast; location of task. Space and

place, i.e. where is the room, what do you walk through to get there. Lighting, temperature

and sound are all factors. What about alternatives like a commode?

Timing: A regular schedule is helpful. Consider how this task works at different times of the

day.

Self-assess: This is an activity that creates great discomfort for many people. Encourage the

group to be sure about their own feelings regarding this, and how they express them. If it

remains uncomfortable, what could they do to “normalize” it? Is this, in fact, something that

they need to get some help with? And are the cues they use with their person working?

Plan

Managing the daily cycle of elimination and urination seems to be the activity most associated

with caregivers reaching some kind of limit. Incontinence is the factor most frequently identified

by caregivers as the reason they consider and then choose to move the person to a long term

care facility. The physical components of incontinence care are unpleasant. The emotional

components of providing this care for a spouse or parent can be difficult. So this is a behavioral

management topic that is or soon will be of considerable concern for participants. It is important

to validate this concern for caregivers, and reassure them that walking through this problem

solving process may give them insight and information to help manage this task.


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The plan needs to specify goals of care. A fundamental part of the plan involves being very clear

about what part, if any, the person can play in this task. Do they give cues about when they need

to go? If so, what are these cues and do they occur at particular times of the day? Does the

person have any times when they reliably need to use the toilet? Can they be counted on for

active help? Passive cooperation? Resistance? Be sure caregivers also anticipate how their

person will respond to being helped.

Some strategies to consider include

Control of fluid intake, while minimizing the chances of dehydration

Maintaining a schedule, with a specific routine for getting to and from the bathroom

Running water to encourage flow

Use of commodes and/or urinals

Introduction of adult briefs, including the routine of getting these on and off

Plan for taking care of skin

Plan for maintaining cleanliness of the home environment

There are a number of steps to the toileting process and each one needs to be mapped out in the

plan. The assessment should provide information about the kinds of cooperation and reactions

the caregiver can anticipate in implementing the plan. In addition to specifying the approaches,

the plan should indicate how the caregiver will initiate the activity; the kind of setting or

surrounding that will be most conducive to success; how communication will take place; and

what kinds of help and direction the caregiver will be providing throughout the process. When

using adult briefs, this task may take place in areas other than in the bathroom.

Part of the plan also includes how the caregiver will approach the unpleasantness of the task.

Caregivers must consider their feelings and possible responses during such an intimate activity.

They need to play a role, and preparing for how they will do this will help them to manage the

challenges involved. Remind them that they may choose to alter their plan of care if this activity

is one they would prefer not to perform. Now is the time to consider what their alternatives are.


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Implement

This part of the exercise will demonstrate whether the goals of care were appropriate. At some

point in the disease process, reducing or reversing incontinence is not an appropriate goal.

Managing voiding and elimination so as to maximize the person’s comfort is an important goal.

Caregiver well-being is a reasonable goal as well. If the goals were not clearly outlined in the

planning phase, adjustments will need to be made during implementation.

Things to keep in mind as part of implementation:

What are the antecedents to support the activity?

What cues will the caregiver use? How will they communicate with their person?

Caregivers need to keep track of each step from initiating the activity to completing it and

moving on to the next activity.

Monitor any change made to the plan during implementation.

Keep track of what worked, what didn’t, their person’s reactions and how they

themselves felt and reacted throughout.


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Evaluate

This is the part of the process where the caregiver looks back and reviews all aspects of the

activity in order to determine what worked and what could be done differently next time.

Although they will not be going into this kind of detail every time, for the purpose of the exercise

and walking through the process, encourage them to break the task down into every component

to consider how it went. If any of the participants have a real life example they are willing to

share, this may be very helpful.

Were goals reached? If not, what fell short?

How did their person respond in each part of the activity? Did this vary?

For parts that went well, what were the antecedents? Note these approaches.

What about for the parts that did not go as well? How did they restore calm?

What was the role of the environment?

What about the caregiver? How did they manage their feelings and reactions?

Finally, what were they able to learn that will help them alter the plan for next time?

The services of an occupational or physical therapist or a home health nurse could be highly

valuable at this time. Because the caregiver is so well informed, an in-home session could be an

extremely productive consultation, providing advice on techniques, products, and other

strategies for toileting.

If, as a trainer, you would like to read specific tips related to toileting and continence, information

is available from NIA at

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_inconti

nence_0.pdf, and from the Alzheimer’s Association at http://www.alz.org/care/alzheimers-

dementia-incontinence.asp.

The final ADL walk through is now complete. Check to see if there are any lingering questions or

concerns before moving on to the program review.

The Care Team

The Care Team (20 minutes)

The focus will now shift to a final review of the Care Team: what they have learned about who is

on their team, how they would like it to shift, and what steps are needed to enable the team to

be more supportive.

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_incontinence_0.pdf

http://www.nia.nih.gov/sites/default/files/sites/default/files/alzheimers_caregiving_tips_incontinence_0.pdf

http://www.alz.org/care/alzheimers-dementia-incontinence.asp

http://www.alz.org/care/alzheimers-dementia-incontinence.asp


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Strengthening the Care Team


Ask participants to share what steps they have taken to strengthen their informal care team, or

options they are considering to help reshape their care team picture so it better addresses their

needs. What strategies have people tried? Remind participants of the activities in which they can

engage to strengthen their care team. They might ask for more help, remove someone or some

organization from the team or renegotiate relationships to make them less draining. Ask what

else they have considered or tried.

What else might they have done? Consider sharing information with team members or

identifying new resources. Do they have any new ideas for how to ask for help?

Challenges and Self-Care (15 minutes)


Be sure you have posted the three lists of “Challenges” that caregivers have been working on

each week. Here is an opportunity to consider how those challenges feel, which challenges they

may have addressed during the series, and which they will feel better prepared to address


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through changes in their care team. Their feelings about the challenges they listed may change as

they alter their care team and feel more empowered through their own self-advocacy.

Grid

Use the feelings quadrant to evaluate shifts in caregivers’ emotional state now that they’ve gone

through the series and created more strategies for getting support. Start with the current

challenges list.

Considering the immediate challenges identified in the first session, how have participants’

feelings changed? What have they done to address any of these challenges?

Considering the challenges listed for the short and long term, how are participants feeling? Have

they garnered better understanding of these challenges? Inquire about their feelings relative to

decision making regarding their care team, and end of life care specifically. Use the quadrant to

plot some of these feelings to see if they have shifted on the grid. Accentuate any actions they

have taken which created more positive or powerful movement for them.

Remember that they have also spent time focusing on all they have lost and will continue to lose.

These feelings may be more tender after discussing later stage care. If feelings of despair or

defeat emerge, it may be possible to work with them within the context of accepting that the

care they are providing is the very best they can do and that their person’s needs may reach a

point where they exceed any caregiver’s capacity. This is a form of acceptance, and it can pave

the way for them to appreciate all their good work.

Improving the care team is an action caregivers can take to help them move to a more positive

and powerful state. Reinforce this. Encourage them to get more and better help from informal

resources and identify and access formal resources.


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Program Re-Cap

Behavior guidance

Emotional and practical challenges

Care team / Resources

Program Re-Cap (20 minutes)

This re-cap is structured to match the three main topics of the program, as listed on the above

slide. Here you can pull together the threads of all the themes of the program.

Behavior Guidance

This begins the main part of the recap. We start with a final opportunity to review the models

and address questions about them. The five slides that follow are the main slides used to

illustrate the behavior guidance strategies taught in the original Savvy program and also referred

to throughout Savvy 2.




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This is the framework we have offered each week to help participants design caregiving

strategies. This model will be quite familiar by now. This is a cyclic model. Each cycle provides

information to help design the next cycle. Remind participants that this is just a framework. It is

intended to help them think about all aspects of an activity, without the expectation that anyone

will go through all these steps for every activity. They are welcome to use the parts of the process

that resonate for them, and return to this framework to address activities that are especially

challenging for them.

Assess: Examine the situation. Determine what is happening. Consider what might have

produced the situation.

Plan: Make a plan of action, based on the assessment of what you think is going on in the

situation.

Implement: Follow the plan of action as carefully as possible, and make note of how things go.

Evaluate: If successful, repeat. If there are problems, or if it just doesn’t work, note observations

from the implementation phase of the plan. Then, start again with the assessment step using this

information.

Fit Activity to Ability

In Savvy 1, we referred to this image as the Anchors of Contented Involvement. This illustrates

the point that, in almost any activity there is a process of continuous and often repeated

assessment that goes on. In this process, we use what we know about a person to adjust tasks

and activities as needed. Caregivers use what they know to select appropriate tasks (Person); to

adjust the kind of task they offer, and the way it is set up (Structure); and to determine what type

of help they give in order to get and keep the person going in the task (Support). At the same

time, using their powers of observation, they continually readjust their strategies based on how

their person is reacting to the task.


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Offer a reminder about the staging system information in participants’ original Savvy Caregiver

manual. Revisiting this information occasionally will help caregivers to adjust their strategies as

dementia progresses.

ABC Model

This illustrates the ongoing message that all behavior has meaning; all behavior is a form of

communication. It is a reaction to or result of something that occurs beforehand. It may not be

self-directed or seem to be directly connected to any stimuli. It is up to the caregiver to figure out

what the behavior means.

This model, based on the work of Dr. Linda Teri, outlines the process of looking back to what

happened before the behavior in order to determine what created it.

Antecedent:

Person decides something

Person experiences something

Person hears or feels something

Behavior:

Person does something; takes some action

Consequence:

Something happens as a result of the action that is taken

Some results serve to produce a new action – possibility of escalation


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The Environment of Behavior


Always consider the impact the surrounding environment has on behavior as part of assessment

and planning. The environment may be considered an antecedent in the ABC model.

Environment can stimulate or respond to behavior.

Encourage caregivers to always think about where care takes place. Sometimes people get stuck

assuming care must take place in certain designated spaces. If there are places where their

person is more cooperative (comfort spots), caregivers may choose to make creative changes in

where activities take place.

Wherever possible, caregivers will have more success when they can accommodate, simplify the

surroundings, make it easier for their person to focus, and reinforce contented involvement. Also,

they can watch for patterns in their environment to track which places tend to be comfort spots

and which tend to be trouble spots.

It is always important to consider safety issues as well and address them as they arise. Enhancing

home safely is vital, and how to do this may need to be revisited as things change.


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Need-Driven Behavior Model


This is one more model that provides a way to think about behavior. Within the framework of the

Problem Solving Process, this model is especially helpful during the ‘assess’ and ‘evaluate’ steps.

Unexpected behaviors may be anything that is puzzling or surprising for the caregiver. This is one

more way to think about the meaning behind the behavior.

Background Factors: There are some things over which the caregiver has no control which

contribute to behavior. Dementia is progressive, and this progression itself also has an increasing

influence on behavior. These background factors may also affect current factors.

Current Factors: These are things that impact their person’s behavior which the caregiver may in

fact have some control over. Attending to these will minimize disruptive behaviors.

It is important to point out that, while the model appears focused on what might be called

troubling behaviors, it is more general in nature and may be quite helpful when the caregiver is

thinking about structuring and guiding any activity.


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Emotional and Practical Challenges


This is an introduction slide to the next section. You just reviewed the challenges earlier in the

session. Now once again the emphasis is on the importance of keeping the emotional impact of

caregiving in mind and what steps to take to strengthen the caregiving situation in whatever ways

possible.


Immediate

6 – 12 months

12 months and beyond


To continue the emphasis on addressing the three major themes of the program, remind

participants once again about the challenges they have stated they are or expect they will be

facing. Congratulate them on identifying and speaking up about these challenges. Many are

taking steps to address them already. Everyone has now considered how they may best prepare

for addressing more in the future.

Looking Ahead

Loss and grieving

Later stage choices

Later stage decision making

Looking Ahead

This slide revisits the discussion topics from week three. All of these involve decision making for

the caregivers, and having a sense of what their person would want. They all also strongly impact

how the caregivers are feeling. Are there any lingering thoughts or questions about these at this

point?

Taking the time to consider these issues and all the options involved produces feelings. This is to

be expected. Taking action to address these feelings will help to move them to more positive and

powerful parts of the feeling quadrant.


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Grid

The feelings quadrant is a simple but useful tool, and caregivers should be encouraged to keep it

in mind and to use it from time to time. Being in touch with their feelings during this taxing time

is important. They know how to identify where their feelings are on this grid, and through letting

go, making a plan, self-advocacy and putting their plan into action, they have strategies for

moving to a more positive and powerful place.

OOVL

This slide reminds participants about the decision making tool. There is a strong link between the

OOVL and two key parts of this program: behavior guidance and team strengthening. They may

use the OOVL to help sort through the options they have and outcomes they would like in

designing and structuring a task. In adjusting the members of the care team, the OOVL may also

be helpful in making choices around how to strengthen the team by clarifying where to get more

support and where to create more distance.


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The Care Team

Strengthening and realigning the team

Adding formal resources to the team

The Care Team

The final part of the recap is a reflection on the care team. The care team is a critical resource as

their person progresses. Remind everyone about both informal and formal resources. Be sure to

remind participants about the resource materials that all participants received. Tap into these as

needed. Don’t wait until there is a crisis.

This is also the opportunity to remind them that in addition to the other formal resources we

have offered them, they are always welcome to contact their Agency on Aging as things continue

to evolve. Hand out reminders of support groups or other caregiver services in your specific area.

Thank you

for all that you do!!

As this is the final class, you will have class evaluations for everyone to complete. While they are

working on these, hand out personalized certificates of completion.


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Maine Statewide Collaboration and Resources The State of Maine is offering Savvy 2 classes under a one year no cost extension to the Administration on Aging ADSSP grant, which runs through August 31, 2014. Only the series’ funded by that ADSSP grant will require the current USM pre-surveys to be sent to participants. Other grants, such as the Dementia-Capable Systems grant through the Maine Office of Aging and Disability Services (OADS), will have separate requirements for data gathering and reporting. Savvy 2 will also be offered through each AAA’s Family Caregiver Support Program (FCSP), as part of meeting the Agency on Aging funding requirements through their state level contracts (Rider A Performance Objectives). Agencies may also identify other funding sources to continue to offer Savvy 2. These might include sponsorships, other grants, tuition, donations, or other ways that the agency develops to sustain the program. Plans for continued sharing of ideas and lessons learned, related to teaching the course, monitoring and maintaining fidelity, and keeping trainers up-to-date, will be discussed and formulated during this grant extension period. During the Administration for Community Living (ACL) grant extension period, the resource people for Savvy 2 associate and master trainers in Maine are: Christine Merchant, Grants Manager Office of Aging and Disability Services 207-287-7134 [email protected]

Contract / grant requirements Training opportunities Funding Fidelity

Kathryn G. Pears, MPPM Dementia Care Strategies, Inc. 207-468-0705 [email protected]

Program fidelity

Training content

Dementia-specific information

Manual revisions / DVDs

mailto:[email protected]



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Linda Samia, RN, PhD, CNL Assistant Professor, School of Nursing University of Southern Maine 207-780-4437 [email protected]

Program evaluation

Core program elements and fidelity

Publication(s) After the grant extension period, it is anticipated that statewide collaboration on this program, including information-sharing, identification of funding opportunities, and ongoing skill development, will continue. When the post-grant structure becomes clearer, all associate and master trainers will receive updated information, which can then be incorporated into their trainer manuals for future reference. As trainers, and authors of this manual, we want to recognize all the effort we know has gone into your becoming a Savvy 2 trainer and teaching the course. The research has already shown us how important this program has been for participants. Thank you for your time, energy, and commitment.
