Support for the Long Goodbye: Art Therapy for Caregivers of Alzheimer’s

Patients

A Master’s ProjectMara Coyle

Adler Graduate School

Why elders and their caregivers?• Lack of elders in large family system. Missing unconditional love from

grandparents• Looking for belonging, safety and significance.• Sought out elders in neighborhood as a child as honorary grandparents.• Sought out mentors as an adolescent volunteer in a nursing home and as

an adult with senior volunteers in my classroom.• Left teaching ready to work with adults. Found work with seniors in senior

housing community in the activities department. Most work with residents in memory care.

• Joy in being in present moment and connecting with residents.• Beginning to notice family members and their distress. Lack of

engagement of staff with most family caregivers.• Design program to meet their need for support

Why this project?Pat and Richard’s Story

Shirley’s Story

Marianne’s Story

Marie’s Story

What is Alzheimer’s disease?• Degenerative disease of brain and nervous system• Affects ability to think,remember and control behavior and

emotions.• Eventually interferes with the ability to carry out activities of

daily living: dressing, bathing, toileting, eating, walking, speaking etc.

• There is no cure, though some medicines slow the progression.

• Disease is always fatal.

Prevalence of Alzheimer’s• 5,000,000 estimated people over 65 in U.S. have Alzheimer’s. • Could grow to over 7 million by 2015 and as high as 13.8

million by 2050. • 14% of population of over 65 in U.S. have Alzheimer’s (2013)• 21% of population could have it by 2040.• 38% of people over 85 have Alzheimer’s and related

dementia.• Projected to rise to 50% by 2050.

• Source Alzheimer’s Association 2015

Chronic Stress on Caregivers

• Yearning for the past• Regret and guilt• Isolation• Restricted freedom• Life stressors• Systemic issues• Coping strategies• Source: Sanders, Ott, Kelber & Noonan, 2008.

Recommendations for caregivers

• Interventions that reduce feelings of isolation.• Provide supportive services to mitigate lack of

freedom.• Relieve feelings of guilt and regret.• Address feelings of loss.

• Source: Sanders, et al. 2008.

What is ambiguous loss?

• Boss defined this as the grief experienced by the loss of a person who is physically present but psychologically absent.

• Caregivers witness the loss of loved ones abilities, memories, identity and connections with family and friends.

• Source: Boss, 1999.

Five year study of 70 Caregiver families

• Depressive symptoms correlated to the degree to which family caregivers viewed their loved ones as present or absent.

• Loss and ambiguity make it difficult to move on.• Can lead to feelings of helplessness and

hopelessness.

• Souce: Boss, 1999.

Adlerian Goals

• Belonging • Safety • Significance

• Losses with families affected by Alzheimer’s disease and related disease.

• Source: Ansbacher & Ansbacher, 1956.

Adlerian Tasks of Life

• Work• Love/Sex• Family and Friends

• Effects on families with Alzheimer’s

• Source: Ansbacher & Ansbacher, 1956.

Germeinschaftsgefuhl• Loosely translated as social interest.• Ansbacher & Ansbacher translated it as community feeling

(Hanna, 1996).• By connecting with others, people get their needs for

belonging safety and significance. • From a community feeling, people are motivated to express

social action in observable ways. • People with ADRD lose belonging, safety and significance.• Families witness the losses and feel them also. In addition,

caregivers have their own losses in those areas.

Benefits of Grief Group for Caregivers

• Caregivers report feeling isolated.• Less isolation by sharing and being with others going through

similar experiences.• Find encouragement in having their thoughts and feelings

normalized by peers especially and through psycho-education. This could add to their sense of safety and belonging.

• By offering support and encouragement to others through social interest, participants may gain sense of significance and belonging.

• Encouragement could help the discouraged carry on with tough job of caregiving.

What I learned from the research• Regret and guilt feelings may delay and complicate decision to

place loved one in residential care (Ellor, 2005). • Possibly tied into lifestyle and mistaken beliefs such as I

should be able to take care of this on my own.• Guilt feelings and regret do not lessen with placement.• Caregivers do not report a sense of relief upon placement

(Ellor,2005). • Grief is ongoing as the result of ambiguous loss as loved ones

lose their abilities, relationships and identity (Diwan, Hougha & Sachs, 2009).

What I learned from the research• Chronological points in time for grieving patterns• Diagnosis• Declines in functioning• Cognition and health• Nursing home placement• Near death• Also multiple points behavioral symptoms• Declines in memories• Recognition of caregivers and other family members (Diwan

et al. 2009)

Need for Social Support• 25% of spouses of people with dementia reported being

depressed themselves (Braekhus, Oksengard, Engeldal & Laake, 1998)

• Multiple losses, bereavement and feelings of being overwhelmed as evidence that caregivers need support just when they feel most socially isolated (Almberg, Graftson & Winblad, 1999).

Art TherapyMake the internal external to ease in talking about feelings and thoughts that are uncomfortable or painful.Have artifacts as transitional objects for loved one’s decline and eventual deathArt expresses the unexpressible. Leads to healing. Way of encouraging self and others.Means of telling stories as part of grieving process.Help release feelings of guilt and regret.Restore sense of well-being.Provide insight, connection and transformation.

Schneider’s Grief Model

• What’s lost?• What’s left?• What’s possible?Important questions to ask throughout the grief process. Knowing that different questions and answers will bubble up at various times. • Not sequential defined stages as other models

are (Kubler-Ross)

Plans for the future• Present my project to my company Ecumen and offer to

present workshop series for family caregivers at other Ecumen sites.

• Work with grant writer to find grant to pay me for workshop series.

• Market workshop to other senior living communities outside of Ecumen.

• Pursue work as an art therapist for adults, possibly working with grief and trauma.