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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>