Communicating ‘Soul to

Soul’: Spiritual

Connections with

Persons with Dementia

ADRC Healthy Communities Summit

Atlanta GA June 19, 2015

Marty Richards, MSW, LICSW

Goal

Identify ways

spiritual/religious

perspectives inform

sharing with those with

dementia and their

carers

Goal

Explore practical

approaches for

incorporating the

spiritual into service

provision

Affirming the

“Personhood” of the

person with Dementia

is Essential to Making

Connection with that

Person and his or her

Carers

Global Dementia Charter

I should have access to a doctor to check if I have dementia.

I should have access to information about dementia and know how it will affect me.

I should be helped to live independently for as long as I can.

I should have a say in the care and support that I am given.

I should have access to high quality care that is right for me.

I should be treated as an individual, with those looking after me knowing about my life.

I should be respected for who I am.

I should have access to the medicine and treatment that helps me.

My end of life wishes should be discussed with me while I can still make decisions.

I want my family and friends to have fond memories of me.

–Alzheimer’s Disease International and Bupa

Person Centered

Principles

“Individuals are still full persons even when they become cognitively impaired.

Principles

People are best understood in context of their relationships, community and worldview, not just through brain pathology and its associated cognitive deficits.

Principles Moving beyond a biomedical

framework to include psychological, relational and spiritual dimensions of the person’s life broadens the initial assessment and opens avenues for person-centered care planning that recognizes the individuality of each person.

Principles

Person-centered assessment and care planning regularly seeks and integrates the person’s input.

Person-centered care planning seeks to implement person-sustaining efforts.”

Benjamin Mast (2013)

We should always seek

to understand a

PERSON first before

attempting to

comprehend the

DIAGNOSIS.

Personhood emphasizes

a person’s story before

their symptoms, abilities

ahead of their limits; and

their capacity to relate to

others rather than their

losses of connection.

“We do not serve the

weak or the broken.

What we serve is the

wholeness of each

other and the

wholeness in life.”

Rachel Naomi Remen (2000)

The religious and or

spiritual dimensions of

one’s life are important

throughout the journey of

dementia. The connection

to these remains long into

a dementia process.

How Knowledge of the

“Spiritual” Informs

Connection

Knowing a person’s past history can assist to stay in touch with the spiritual/ religious in the “now.”

Aids in taking a strengths oriented, not a deficits approach to sharing with a person.

Affirms the part of a person that is still whole despite the dementia.

Ways to Connect

Incorporate long term memories of ritual and traditions into programming interactions.

Encourage care partners to utilize the spiritual/religious in their day to day interactions with a person with dementia.

Ways to Connect

Confront stigma about what those with dementia can or cannot do.

Understand unusual behaviors and learn ways to adapt communication around them.

Ways to Connect

Remember the essence of the person (often accessed through story), and encourage care partners to do the same.

Share laughter, love and joy.

Use humor.

Always be a “friend.”

“Joy is love

dancing.”

Approaches for

creatively integrating

the “spiritual” into

service provision for

those with dementia

and their care partners

“Being present” and in

the “now” with a person

with dementia are the

most essential

elements of “soul to

soul” connection.

Creative Ways to Access

the “Spiritual”

Using visual arts

Connecting with music and poetry

Accessing the familiar from religious traditions

Creative Ways

Observing and adapting ritual purposefully

Educating and supporting spiritual leaders to keep a person with dementia involved in traditional observances

Assisting “Hands on”

Carers to Use Creativity

Remind them of shared spiritual activities with person with dementia.

Help with adapting activities to include the spiritual in communication.

Assisting Carers

Teach creativity skills.

Encourage them in their own religious/spiritual life to do self-care.

Aid them in educating others about sharing with the person with dementia.

Assisting Carers

Remember the religious/ spiritual aspects of decision making for themselves and their care partner.

Help adapt spiritual practices to work for the person with dementia and themselves.

“A friend knows the

song that is in my heart

and sings it to me when

my memory fails.”

Donna Roberts

Resources

Angelica, Jade. (2014). Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’’s. Boston: Skinner House Books.

Bell, Virginia & Troxel, David. (2012). A Dignified Life, Revised and Expanded: The Best Friends Approach to Alzheimer’s Care: A Guide for Caregivers. Baltimore: Health Professions Press.

Resources

Fazio, Sam. (2008). Forget Memory. Creating Better Lives for People with Dementia. Baltimore: Johns Hopkins University Press.

Alzheimer’s Disease International. <www.alz.co.uk>

Kitwood, Thomas. (1997). Dementia: The Person Comes First. Philadelphia: Open University Press.

Resources

Mast, Benjamin T. (2013). Bringing person-centered care to people with early stage dementia. Generations. (37) 63-65.

Remen, Rachel Naomi. (2000). My Grandfather’s Blessings: Stories of Strength, Refuge and Belonging. New York: Riverhead Books.

Creativity and Dementia

Resources Alzheimer’s Poetry Project

<alzpoety.blogspot.com>

Elderwise <www.elderwise.com>

Here:Now Freye Museum <http://freyemuseum.org/here_now programs>

Memory Café <www.alzpoetry.com>

Creativity and Dementia

Resources Meet Me at MOMA Modern Museum of Art

<www.moma.org/meet me>

National Center for Creative Aging <www.creativeaging.org>

Songwriting Works <www.songwritingworks.org>

Time Slips <www.timeslips.org>