by Susan McFadden

One of the biggest challenges for people with dementia is retaining a sense of identity and meaning in life. How do people do this when they lose the ability to learn and retain new information, are confused about time and place, and have to rely on others to do things they once did independently? Researchers in the Netherlands conducted interviews with 14 people having mild to moderate dementia in order to answer this question.

Personal dignity reflects people’s sense of having value and worth. It comes from our own feelings about theself and it also comes from how we are treated by others. People who say they have lost the feeling of personal dignity say they feel worthless and of no use to others.

What contributes to a sense of personal dignity? The people with dementia interviewed for this research stated that they felt they had lost important parts of their identity, mostly because they no longer felt they could fully exercise autonomy in the way they had before dementia set in. They now needed others for guidance in decision-making and in performing various tasks of everyday living. Nevertheless, most of these individuals with dementia still felt they had meaning in their lives and thus were holding onto dignity, largely because they continued to do some worthwhile activities in their homes. For example, one woman talked about how she could still dig in her garden.

All of the people in this study had experienced growing dependency on others but the ones who maintained a sense of personal dignity had learned to accept and respect the help their partners gave. One man talkedabout how he uses his wife’s memory. He said, “I consciously use her memory, or at least I realize that I make clever use of her memory.” Thus, although he recognizes that he is increasingly dependent on his wife, he stillis able to maintain his own dignity by describing it as a choice he has made to rely on her memory.

An important component of personal dignity noted in this research was having the opportunity to give back to others. This reminds us that dementia-friendly communities should not just focus on doing things for people with dementia and their care partners, but these communities should also enable people living with dementia to feel like they can be helpful to other people. In addition, people commented on how important it was for them to feel that others in their community respect them. Outside of the safety of the home, people with dementia sometimes worry about losing their dignity in front of strangers. This is one reason why it is so important to create dementia-friendly communities that include Purple Angel training so employees in places like restaurants, shops, banks, dental practices, etc., treat people with dementia with patience, understanding, and kindness.

Being able to continue to perform daily routines and chores at home, while feeling safe and comfortable insituations outside the home, all contributed to people’s feelings that life still could be meaningful and thatpersonal dignity could be maintained. For most of the people in the study, their partners made a good life possible by keeping some semblance of normalcy even in the midst of the changes and challenges of dementia.

A major take-home message in this research on personal dignity is that it is relational. In other words, the social context in which a person with dementia lives is a key contributor to personal dignity. In order to help the ones they love who have dementia keep their sense of dignity and meaning, care partners need the support of a dementia-friendly community just as much diagnosed persons.

Van Gennip, I. E., Pasman, H. R. W., Oosterveld-Vlug, M. G., Willems, D. L., & Onwuteaka-Philipsen,B. D. (2016). How dementia affects personal dignity: A qualitative study on the perspective of individuals with mild to moderate dementia. Journals of Gerontology: Social Sciences, 71, 491-501.

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