Maintaining Dignity in Dementia

A research team in the Netherlands published an article in the Journals of Gerontology: Psychological Sciences and Social Sciences that looks at how dignity is affected in persons living with dementia. This blog post summarizes the findings and offers a practical guide for maintaining dignity.

In the study titled “How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals with Mild to Moderate Dementia,” Dr. Isis E. van Gennip and team interviewed fourteen (14) persons living with dementia, covering three aspects of dignity: 1) Individual/self-dignity, 2) Dignity impacted by relationships, 3) dignity impacted by society/outside world/strangers.

Self-Dignity

Most of the participants felt what van Gennip (2014) noted as a loss of “identity” and “autonomy” (p.494). They felt they were not themselves and relied on others to do many things they used to do independently.  The participants lost autonomy because they were no longer able to make decisions or be involved in decisions. These losses impacted self-dignity, but participants retained some dignity because they were able to continue some tasks and participate in what van Gennip (2014) called “meaningful activities” (p.494). One such activity as described by one participant is spending time working on the garden as they have always enjoyed. For these participants living with dementia, self-dignity is preserved at the moment, but many feared the future loss as dementia is progressive.  STOP for a moment and imagine that you are not able to make decisions that you are able to make today. Would you feel the same about yourself?

Dignity in Relationships

The second aspect that researchers explored was how dignity is impacted by relationships, particularly between the person living with dementia and their care partner. Nine of the fourteen participants with dementia in Dr. van Ginnep’s study lived with a spouse or partner.  Interviews revealed that while being assisted in the bathroom or with feeding could lead to loss of dignity, they were grateful for the assistance.  The courteous attitude and actions of the care partner helped to maintain dignity. The participants were very grateful to be living in their home environment and understood that their partner made it possible. Of course, remaining at home is also based on the care partner’s ability to provide care at the level needed. Interestingly, van Gennip (2014) found the participants living with dementia were able to maintain dignity through “delegation” and “reciprocation” (p. 496). Delegation refers to the person living with dementia actively making decisions of what assistance they needed and when, as well as what supplies were needed.  Reciprocity refers to using remaining abilities to do something for the care partner to create a sense of equality.  You probably feel good when you can return a favor, even when not required.  The article offers advice and wisdom as a way for the person living with dementia to give back.   Another idea to consider includes assisting the care partner with cooking, perhaps mixing ingredients that have already been measured. Be creative and I encourage you to ask your loved one for assistance.

Dignity in the Outside World

The third and final aspect studied in the article was how dignity is impacted by the outside world.  While dignity tended to be maintained at home and with loved ones, being out in the public with strangers presented an opportunity to be very uncomfortable.  Examples include: feeling embarrassed when not able to function normally, others not believing the presence of dementia when functioning well, and being treated like a child. This led to a feeling of wanting to be home to avoid these encounters, which is very understandable.

This study, and others like it, are important in that they contribute to all of us developing empathy for persons living with dementia.  Even if we feel we are excellent care partners or friends, we should pause and examine if we are truly helping in improving or maintaining dignity. In the rush and stress of caregiving, it can be easy to slip into a routine of just getting through the tasks. My case for empathy is not to add another burden to a care partner’s very full plate. Rather it is in hopes that an improvement in dignity for your loved one with dementia will contribute to your well-being and confidence as a care partner.

Based on this study’s findings, here are some ideas from Care Partner Mentoring LLC to try with your loved one living with dementia. Please see this free Guide sheet that will help you put these ideas into action:

•      Allow them to continue things that they can still do. (cueing if needed)
•      Create opportunities for meaningful activities
•      Offer simple choices
•      Take them seriously and respect choices (They have dementia, but they are adults)
•      Give them an opportunity to do something for you
•      Avoid denying the illness (even in your head), even when they seem to be physically fit and/or having a “good day”
•       Be patient when trying to communicate (asking repetitive questions, forgetting names, etc.)
•       Treat them like an adult – not like and infant or child

Thanks for reading. Please comment, share, and check out the free Guide sheet!

For a PDF of this article, click HERE.

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Literature Cited

Gennip, I. E., Pasman, H. R., Oosterveld-Vlug, M. G., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2014). How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals With Mild to Moderate Dementia: Table 1. GERONB The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 71(3), 491-501. doi:10.1093/geronb/gbu137