marty richards, msw, licsw 2018 · 2018-05-01 · boss, pauline. (2011). loving someone who has...

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


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.


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.


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


Family Dynamics

RolesRulesSecretsResponsibilities

Roles

May be culturally specifiedAre functional or relationalDevelop early in life and carry forward even when not helpful.


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.


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.


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.


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 Feelings

Sadness/GriefFearAngerGuilt

Family Feelings

Helplessness/FrustrationsHopelessnessPowerlessnessAmbivalence


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.


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”


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?


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.


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.”


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.


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.


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.


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


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


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>


marty richards, msw, licsw 2018 · 2018-05-01 · boss, pauline. (2011). loving someone who has...

Documents