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Purposeful Living with Dementia

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A sense of purpose is something we all have throughout life, whether we are aware of it or not. As a child, your purpose might have been to get chores done in order to ride your bike; while as an adult it might have been to get home early enough to fit in that walk or swim or run. In retirement our sense of purpose changes, maybe returning to the childhood goals of getting your chores done so you can go golfing or paint — fill in the blank with your favorite pursuit.

However, a diagnosis of any kind turns that purpose upside down - particularly a dementia diagnosis. As care partners, it is often a 10-20 year long set of increasing limitations. In the early stages, we can often maintain our purposeful life with adjustments. But as the brain degenerates, the sense of purpose is harder to recognize or define for one or both care partners.

Caregiver gains were associated with care partners who had a higher sense of purpose in life, at least for female caregivers.1

 

The term caregiver gain was used to quantify the extent to which giving care increased.

  • Confidence
  • Resilience in difficult situations
  • Closeness to the individual with dementia
  • Satisfaction in providing good care

Sense of purpose was measured in response to the statement “my life has meaning and purpose.” The care partner with dementia had an equally higher sense of purpose when his/her caregiver reported caregiver gains.

But how does a caregiver start reaping gains?

  • Dementia education
  • Support and help

Confidence, resilience and satisfaction in providing good care come from educating yourself on the disease and learning from others in the same situation. This is true for both care partners. Memory café events, support groups, dementia mentoring groups — each offer the comfort and collective knowledge of like-minded people. Even something as simple as a therapeutic singing group has been shown to give dementia care partners improved social confidence, mood and a sense of purpose even for those who had never sung together before.2

Life with dementia is challenging, but can be fulfilling. Finding your sense of purpose may entail adaptations to your golf game, your volunteer job or even your reading methods. By reaching out to others who share the diagnosis, you can readjust your purpose to meet you and your care partner’s needs.

By-line: Cate McCarty, PhD’s background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia. Cate is currently the care partner for her spouse who has early-stage dementia of the Alzheimer’s type.

Footnotes

1Polenick CA, Sherman CW, Birditt KS, Zarit SH, Kales HC. Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains. Gerontologist. 2019 Sep 17;59(5): e424-e432. doi: 10.1093/geront/gny063. PMID: 29873736; PMCID: PMC6857691.

 2Clark IN, Tamplin JD, Baker FA. Community-Dwelling People Living With Dementia and Their Family Caregivers Experience Enhanced Relationships and Feelings of Well-Being Following Therapeutic Group Singing: A Qualitative Thematic Analysis. Front Psychol. 2018 Jul 30; 9:1332. doi: 10.3389/fpsyg.2018.01332. PMID: 30104994; PMCID: PMC6077620.