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Guilt and Glitter in the World of Dementia

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Guilt and glitter often coordinate well in this season of family living near and far. Whether you gather virtually or in person this year, inevitably there will be the uninformed comment from a friend or relative who brings the gift of guilt. They may not have intended to give you guilt—but guilt is one of those gifts that just keeps on giving. This is particularly true in the dementia world.

A guilt-inducing statement made by a person with no experience in the dementia world comes from a black and white absolutism. “Shoulds” and “nevers” are absolutes which linger in families. Research shows absolute thinking makes for poor physical and psychological health when the absolute thinker is confronted with personal, domestic or work problems.1 Chances are the guilt inducer has not experienced life with dementia like you are experiencing it.

Stigma and shame are often a product of a family care morality.2 Over the generations, the family may have developed a moral culture that cripples the individual from seeking help.

One study broke the guilt attributes down into three factors.3,4

  • A moral responsibility and expectation to care for the individual living with dementia
  • A negative subjective appraisal of one’s caregiving performance including self-neglect
  • A sense of violation or transgression based on a moral standard of care

Uncle Bill says, “We kept grandmother at our house, that’s how we take care of our elders.”

Your sister says, “He is just fine, you never were good at being patient.”

Your friend says, “You promised in sickness and health . . . I’m just saying.”

How do we cope with the guilt—intended or not?

Consider offering simple declarative statements:

To Uncle Bill, “That was then, this is now.”

The world was a much different place then. Bolster yourself with reflection—when great grandmother was old, there were very few care options. Uncle Bill’s life was quite different than yours. Comparison of the time periods is not realistic.

To your sister, “You are right. I could really use your help. Would you mind taking him for an afternoon once a week? I need time to get better at this.”

To your friend, “I cherish that promise and will continue to cherish my spouse regardless of how much additional care I access.”

Guilt can be devastating and ultimately stand in the way of accessing the best care for our care partners. There is no one right answer, just like there are only individuals with dementia—each one unique. A recent study showed caregivers valued sharing support groups and memory café events as a way to process guilt, share struggles and find support.5

Treat yourself to the gift of support from someone who truly understands life with dementia.

Footnotes

1Al-Mosaiwi & Johnstone, T. (2018). In an absolute state: Elevated use of absolutist words is a marker specific to anxiety, depression and suicidal ideation, Association for Psychological Science.

2Hanssen I, Tran PTM. The influence of individualistic and collectivistic morality on dementia care choices. Nurs Ethics. 2019 Nov-Dec;26(7-8):2047-2057. doi: 10.1177/0969733018791342. Epub 2018 Sep 10. PMID: 30200811.

3Prunty MM, Foli KJ. Guilt experienced by caregivers to individuals with dementia: A concept analysis. Int J Older People Nurs. 2019 Jun;14(2):e12227. doi: 10.1111/opn.12227. Epub 2019 Feb 22. PMID: 30793838.

4Gallego-Alberto L, Losada A, Márquez-González M, Romero-Moreno R, Vara C. Commitment to personal values and guilt feelings in dementia caregivers. Int Psychogeriatr. 2017 Jan;29(1):57-65. doi: 10.1017/S1041610216001393. Epub 2016 Sep 9. PMID: 27609481.

 5Fukui C, Fujisaki-Sueda-Sakai M, Yokouchi N, Sumikawa Y, Horinuki F, Baba A, Suto M, Okada H, Ogino R, Park H, Okata J. Needs of persons with dementia and their family caregivers in dementia cafés. Aging Clin Exp Res. 2019 Dec;31(12):1807-1816. doi: 10.1007/s40520-019-01129-2. Epub 2019 Jan 29. PMID: 30694511.

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