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Cultivating a Sense of Purpose in People With Dementia
By Catherine Nakonetschny, MSW, LSW, CDP

In 2012, 810 million people across the globe were aged 60 or older. This number accounted for 11.5% of the world's population, and that number is expected to reach 1 billion by 2022. As human beings age, gradual changes occur to the body as part of the natural aging process. Our skin becomes less elastic, increasingly dry, and more wrinkled. Fingernail growth slows. Hair thins and as pigment cells die, gray hairs increase, and we shrink. It is inevitable. By age 80, it is not uncommon to lose up to two inches in height. We lose visual acuity, and our hearing can diminish. Some people have noticeable changes in their sleep patterns and get up to use the bathroom more frequently. Bones become less dense and weaker. Some people notice changes in memory, and although this change may be concerning, it does not constitute the first sign of dementia. Many people live well into their 90s without having a dementia diagnosis.

What is dementia? How does it affect us? How can social workers help those already affected? According to the DSM-5, neurocognitive disorders (dementia) are characterized by primary deficits in cognitive functioning not associated with a developmental disorder. These diseases include Alzheimer's disease, vascular disease, Huntingdon's disease, frontotemporal lobe degeneration, and Parkinson's disease; they are not present at birth and represent a decline in previous levels of functioning. There are no known cures for these diseases, and very few treatment options are available. Worldwide, approximately 47.5 million people have a current diagnosis of some type of dementia, and, according to the World Health Organization, 7.7 million more cases are diagnosed each year. It is estimated that every four seconds, someone in the world is diagnosed with dementia. According to the Alzheimer's Association, in 2015 approximately 5.3 million Americans had Alzheimer's disease, the most common form of dementia.

According to the Alzheimer's Society, dementia not only steals memories and fosters depression and anxiety, it also robs individuals of their sense of purpose in life. Behavioral and psychological symptoms affect up to 95% of individuals diagnosed with dementia; depression occurs in 20% to 40% of cases and anxiety occurs in 5% to 20% of cases. Depression and anxiety are linked to increased mortality, reduced quality of life, and loss of meaning and purpose in life. Studies have shown that individuals diagnosed with depression and anxiety score significantly lower in purpose in life measures than those without (Hedberg, Gustafson, Alex, & Brulin, 2010). Studies also show a correlation between greater purpose in life and lower rates of depression and sadness (Dixon, 2007).

Richard Leider, one of America's preeminent executive life coaches and renowned expert on purpose and meaning in life, has postulated that purpose is fundamental to an individual's health, happiness, and longevity (2015). For many individuals with dementia whose purpose and meaning in life has been stolen by dementia, well-meaning caregivers may exacerbate the situation. Individuals may be identified as their disease rather than as individuals in their own right with hopes, dreams, regrets, and history. In "My Name is Not Dementia," a 2010 landmark study by the Alzheimer's Society, individuals with dementia expressed what it was like to have their sense of purpose and meaning in life taken from them:

"Because I have got this vascular dementia, I am not suddenly altering my ways, I am still X. I am still loving, caring and I still have feelings, like we talked about and I would like to think I haven't changed. It would be nice if a lot of people had more understanding and appreciate what we have got … ."

Individuals with dementia still understand that helping out, being busy, lending a helping hand, giving to other people, being listened to, and feeling that they belong are important indicators of quality of life. How do we, as social workers, assist individuals to cultivate an ongoing sense of purpose and meaning in life?

To live with purpose means to unlock our story, our gifts, and our curiosity (Leider). Social workers working with individuals with dementia must gain a clear understanding of a client's relationships, social histories, values, and beliefs.

We must obtain a comprehensive social history from the individual and his or her family members. This history must focus on meaningful relationships, spirituality, activities they enjoy (both past and present), hopes, dreams, and life review. Psychosocial histories are an important tool in cultivating purpose and meaning in individuals with dementia. The individual, his or her caregivers, and family and friends should all have an opportunity to participate in this process. Asking questions like, "How would you like to be remembered," "What are your hopes and dreams and how have they changed over time," and "What is important to you" can give us important information to assist in creating a personalized plan of care for each individual.

This is only the beginning of the process. Social workers also need to work with individuals with dementia, activities professionals, nursing staff, administration, families, and the community at large to create opportunities for meaningful engagement. Opportunities for volunteering, intergenerational programs, and artistic and musical pursuits are important tools to help cultivate a sense of purpose and meaning in individuals with dementia.

When offering volunteer opportunities, social workers need to take into account the individual's strengths at the time of volunteering. For example, Montessori-based dementia programs, based on the educational principles of Marie Montessori (1870–1952) and the work of Cameron Camp, PhD, engage individuals in meaningful activities and allow for the highest level of functioning possible. Individuals with dementia are given tasks that accentuate their strengths and their abilities, and decrease feelings of stress and anxiety. These programs take into account what an individual likes and wants to do, and centers not on challenging the individual, but taking them a bit beyond their comfort zone. This provides opportunity for learning and decreases frustration and anxiety. The outcomes for these programs include enhanced self-esteem and meaningful social roles to the individual with dementia. Studies have shown that Montessori-based activity programs keep individuals with dementia more engaged in their environment while decreasing signs of depression, anxiety, and agitation (Orsulic-Jeras, Judge, & Camp, 2000).

Individuals with dementia are often drawn to intergenerational activities, as children are generally perceived as less threatening and more accepting of elders. Intergenerational volunteering positively affects the older adult's health and well-being, activity, strength, and cognition. Studies have shown that intergenerational volunteering opportunities may decrease stress, improve mood, and decrease social pressures. Sense of purpose and meaning in life also is increased through role continuation, reminiscence, and the joy of teaching children. These relationships, established between children and individuals with dementia, can decrease anxiety and perseverations about physical health (George, 2011).

Art and music provide an important outlet for individuals with dementia. Social workers should encourage individuals to continue artistic pursuits. The objective is not to achieve perfection but to allow an outlet for the release of depression, anxiety, and frustration. Allowing individuals the opportunity to use art, crafts, and needlework to express themselves can be very useful, especially in individuals whose verbal skills are in decline. Such activities allow them to remain active and productive members of their community. William Utermohlen, a respected artist from Philadelphia, after being diagnosed with Alzheimer's disease in 1995, began a series of self-portraits that continued over the next eight years. By adapting his style to his abilities, Utermohlen was able to create a record of his struggles with his disease process. His works have been featured in galleries and educational facilities throughout the world and serve as an example of how art and music can sustain the purpose and meaning in the life of an individual with dementia.

By cultivating a sense of purpose in individuals with dementia, social workers are on the forefront of nonpharmacological interventions to combat the feelings of depression and anxiety associated with dementia. Purpose and meaning in life increase quality of life in individuals with dementia and improve overall well-being in a population that is too often marginalized and forgotten.

— Catherine Nakonetschny, MSW, LSW, CDP, is director of social services at The Evergreens in Moorestown, NJ.

References
Dixon, A. L. (2007). Mattering in the later years: Older adults' experiences of mattering to others, purpose in life, depression, and wellness. Adultspan Journal, 6(2), 83-95.
George, D. R. (2011). Intergenerational volunteering and quality of life: mixed methods evaluation of a randomized control trial involving persons with mild to moderate dementia. Quality of Life Research, 20(7), 987-995.
Hedberg, P., Gustafson, Y., Alex, L. and Brulin, C. (2010). Depression in relation to purpose in life among a very old population: A five year follow-up study. Aging & Mental Health, 14(6), 757-763.
Leider, R. J. (2015) The power of purpose: Find meaning, live longer, better. 3rd Ed. Oakland, Ca. Barrett-Koehler Publishers Inc.