marty richards, msw, licsw 2018 · 2018-05-01 · boss, pauline. (2011). loving someone who has...
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Building on Family Dynamics in Coping
with Alzheimer’s Disease
Marty Richards, MSW, LICSW 2018
Goal:Identify family dynamics:
how roles, rules and secrets affect families dealing with dementia
Family Dynamics (Richards), NW GWEC Spring 2018 1
Goal:Explore major emotional concerns in dealing with
dementia
Goal:Offer practical
strategies for assisting families and persons
with dementia, building on their resilience
Family Dynamics (Richards), NW GWEC Spring 2018 2
Basic Assumptions
Dementia affects all ages.It is a “family disease.” There is stigma felt by the person with dementia and their “family.”The stigma “narrative” can be changed.
More Assumptions
All families are unique systems.Each family defines situations in their own way. Family members and family systems can change.
Family Dynamics (Richards), NW GWEC Spring 2018 3
More Assumptions
Persons may be at different places along the family developmental cycle.What is effective for one generation may not work for another.
More Assumptions
Families have strengths as well as concerns.Carers and persons with dementia can build on resiliency and reciprocity.
Family Dynamics (Richards), NW GWEC Spring 2018 4
More Assumptions
Each family has unique cultural perspectives. The “frail” have much to teach the “well.”All in the family need to maintain hope.
A CareSharingApproach
Person receiving care +Person receiving care=CARE PARTNERS
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Family Dynamics
RolesRulesSecretsResponsibilities
Roles
May be culturally specifiedAre functional or relationalDevelop early in life and carry forward even when not helpful.
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RolesMay predict how a person with dementia “fits in”Naming roles may assist families.Sharing roles lifts some of the stresses experienced.
Maintaining the role of “family member ” for the person with dementia is KEY.
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Rules
Govern how a family operatesAre deeply rooted in religion, culture, and societal values“Reframing” can be useful.
Secrets
All families have them.Some are hidden for years. Old secrets may not be today’s secrets. Shame may exist around secrets.
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SecretsUnderstanding that secrets exist may keep them from “boiling up.”Acknowledging secrets may offer opportunities for forgiveness and working on “unfinished business.”
ResponsibilitiesFamilies constantly balance responsibilities.Each family works out its own equilibrium. They may be “judged” by others.Conflicts can exist between work and home.
Family Dynamics (Richards), NW GWEC Spring 2018 9
Responsibilities
Issues come up between generations.Competing responsibilities can overwhelm persons.There can be benefits in assisting families to evaluate and make choices.
Family Feelings In Coping with DementiaExist for the person with dementia as wellAre present for those around him or her as wellNeed to be acknowledged and named
Family Dynamics (Richards), NW GWEC Spring 2018 10
Family Feelings
Sadness/GriefFearAngerGuilt
Family Feelings
Helplessness/FrustrationsHopelessnessPowerlessnessAmbivalence
Family Dynamics (Richards), NW GWEC Spring 2018 11
Family FeelingsThey are not “bad” or “good;” they are.Naming them can lessen negative impact.Sharing with others assists persons feel less alone.Shifting the narrative is key.
Ambiguous Loss
Complicates grief.Is a rollercoaster of losing/ finding over and over again.Can be emotional “quicksand.”Uncertainties are difficult.
Family Dynamics (Richards), NW GWEC Spring 2018 12
Ambiguous Loss
Important to “be present.”Focus on what person CAN do.Use both/and thinking.Find ways to develop “meaningful connections.”Grieve small losses as they occur.
It is Also Possible to Share
LaughterLove JoyThe “spiritual”
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Assessment of Family Relationships
Does family have positive interactions over time? Is there a history of conflicted relationships? What are family strengths?
Assessment of Family Relationships
What has worked in the past that could be used now?What new skills could be learned? What is the best way to offer assistance?
Family Dynamics (Richards), NW GWEC Spring 2018 14
Ethical Dilemmas For the Family
Revolve around “quality of life”What to tell…who to tell of the diagnosis and functional concerns
“Quality of life” has many meanings. Each person
has a unique definition. It is important to know how a
person with dementia and his or her family perceive
this.
Family Dynamics (Richards), NW GWEC Spring 2018 15
More Ethical Dilemmas
Safety vs. autonomyDriving Decision making challenges Bounded choices
Goals for Helping Families Cope:
Change from a “crisis mentality” to a “comforting presence.”Small steps can move from stigma and stagnation to “well-being.”
Family Dynamics (Richards), NW GWEC Spring 2018 16
Goals for Helping Families Cope
Entire family is the “unit of service” The person with dementia has important family roles.
Strategies for Assisting Families
Utilize the gifts of all ages to keep the family functioning. Assist in negotiating barriers to service provision.
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Strategies
Build on the internal resources of a family.–Sense of humor–Faith–Good communication skills–“True Grit”
Strategies
Teach limit setting. Model effective communication skills.Stress contingency planning.
Family Dynamics (Richards), NW GWEC Spring 2018 18
Strategies
Build on “community” to support families coping with dementia.Use realistic hope with the family, and keep your own hope alive.
StrategiesMake intentional use of spiritual support where appropriate.Assist persons to have success in small increments.Develop “dementia friendly” communities.
Family Dynamics (Richards), NW GWEC Spring 2018 19
Strategies for Assisting Families
Use creativity.Build on family coping skills that work for them.Help develop new skills.Utilize education.
Creative Avenues for Family Sharing
MusicArtStoriesPoetry
Family Dynamics (Richards), NW GWEC Spring 2018 20
ResourcesDementia Action Collaborative, WA state. (2017). Dementia Road Map: A Guide for Family and Care Partners. www.dshs.wa.gov/altsa.dementia-action-collaborativeBell, Virginia & Troxel, David. (2012). A Dignified Life, Revised and Expanded: The Best Friends Approach to Alzheimer’s Care: A Guide for Care Partners. Baltimore: Health Professions Press.
Resources
Boss, Pauline. (2011). Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief. San Franscisco: Jossey-Bass.
The Hummingbird Project. (2016). Joyful Moments: Meaningful Activities to Engage Older Adults. Millbrae, CA: Sage Eldercare Solutions. www.humingbirdproject.net
Family Dynamics (Richards), NW GWEC Spring 2018 21
ResourcesAlzheimer’s Poetry Project <alzpoety.blogspot.com>Freye Museum <http://freyemuseum.org/here_now programs>Memory Café <www.alzpoetry.com>Modern Museum of Art: <www.moma.org/meet me>Songwriting Works <www.songwritingworks.org>Time Slips <www.timeslips.org>
Family Dynamics (Richards), NW GWEC Spring 2018 22
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