A Worthy Resolution: Visiting a Loved One with Dementia & Their Caregiver

Chances are great that you know someone who either has dementia or is a caregiver for a loved one with dementia. Dementia is an "umbrella" or catch-all term to describe a group of chronic symptoms that include memory impairment, poor judgment, disorientation of time and place, behavior changes, challenges in concentrating, and more symptoms. Dementia is caused by specific disease or combination of diseases such as Alzheimer's disease (most common), dementia with Lewy bodies (second most common), vascular dementia (from stokes), frontotemporal degeneration (FTD), Parkinson's and others.

The reason that you may know someone affected by dementia is that 7.25 million persons in the U.S have some type of dementia- it could be a family member, a friend, a neighbor, or a colleague (Alzheimer's Association, 2016; World Health Organization, 2016).  There are varying stages where you may or may not see clear signs.

The research and experience tell us that when someone is diagnosed with dementia, their world, and the world of their primary caregiver, gets smaller as friends and even some family stopping coming around.

Why does this happen and what is the impact of their shrinking world?

Please allow me to shift a moment and speak directly to you if you have shrunk away...
-Are you afraid of what to say?
-Do you fear that this may happen to you?
-Are you wanting to remember your loved one as you always knew them?
-Think you are going to catch dementia like you would catch a common cold?
-Is it that you don't want to embarrass your loved one?

We all process and cope with stress differently. Do you recall "fight, flight, or freezing" responses? The circumstance of dementia is not easy for anyone - not your loved one, their caregiver, or certainly not for you as a friend or family member.

I pray that you consider the impact of your absence and make a resolution to visit the person with dementia and their primary caregiver soon. 

In 1980 Dr. Steven Zarit and his team conducted a landmark study on "caregiver burden" (Zarit, Reever, Bach-Peterson, 1980, pp 649-655). The researchers set out to identify the sources of caregiver burden and they found things that surprised even them.   One of the things that they uncovered was that the level of memory impairment or behavior issues did not impact burden, as is typically expected. The only studied variable that seemed to impact burden was the number of visits; the number of visits to the caregiver had a positive effect in decreasing caregiver burden.  

Those caregivers with fewer visitors had high feelings of burden; those with more visits had less burden when comparing them.

    I was at a meeting of caregivers recently and I brought up the topic of some friends and family not coming by since the diagnosis of dementia.  The general consensus was that it was hurtful when this occurred; on the other hand, loyal visitors made a world of difference for both the person with dementia and the caregiver.

  A former caregiver whose young husband passed away with dementia said that her husband captured the essence of why visits are important.

She movingly said, "He could still feel love."

    A current spousal caregiver recommended having a candid conversation with a friend that discontinued visits.  "If they don't like what you have to say, they weren't coming around anyway'" she said.  She advised our group that the friends and family who avoid visiting "need to put on their big boy pants and get over it."  Indeed, dealing with the "ambiguous loss" that many of us experience when a loved one is physically present, but psychologically not the same/present, certainly involves overcoming an obstacle.

    You may recall that many of my blog articles discuss preventing the three plagues of institutionalism at home, "loneliness, helplessness, and boredom" of persons with dementia. Let us remember to prevent these maladies in their caregivers as well (Thomas, 1996, p25).

     Thanks for reading!  Please share this with some who may need it - perhaps someone who you want to start visiting again.

As always, I am interested in your comments. Please leave some below!

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.

References

Alzheimer’s Association. (2016) . 2016 Alzheimer’s Disease Facts and Figures . Chicago, IL: Gaugler, J, James, B, Johnson, T, Scholz, K, and Weuve, J. Retrieved from https://www.alz.org/documents_custom/2016-facts-and-figures.pdf . Retrieved November 23, 2016.
Thomas, William. (1996). A Life Worth Living: The Eden Alternative in Action. Acton, MA: Vander Wyk & Burnham.
World Health Organization. (2016) . Dementia Fact Sheet . Retrieved from http://www.who.int/mediacentre/factsheets/fs362/en/. Retrieved November 23, 2016.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist, 20(6), 649-655.

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

Meaningful Activities for Persons Living with Dementia: Why and How

In his book A Life Worth Living: The Eden Alternative in Action, Dr. Bill Thomas (1996) states "Loneliness, helplessness, and boredom are impervious to the silver bullets of modern medicine" (p. 25).  In other words, there is no pill for the three conditions that he calls the "nursing home plagues."   These plagues, however, are not reserved for nursing homes or facilities only.  They appear in many private homes daily.

One important strategy to counter institutionalization in any environment is to offer meaningful activities.  Not just bingo. Not just shuffleboard. Not just folding laundry. Think individual interests.  

Geriatrician and colleague of Dr. Thomas, Dr. Allen Power (2010) discusses the role of engaging persons living with dementia in his book Dementia Beyond Drugs :

         A simple pleasure is just what the name implies: a simple activity one engages in regularly that     brings pleasure and satisfaction.  Everyone has one or more of these. The key is that each person's simple pleasures are highly individualized and often carry special meaning for the person. In fulfilling a simple pleasure, it is critical to obtain all of the little details that make it a special experience. (Power, 2010 p. 93 kindle)

A 2009 article by Kolanowski and colleagues discusses the use of recreational activities to reduce "behavioural symptoms" that typically frustrate both family and professional care partners (Kaolanowski, 2009 p27) rather than drug interventions.  Let's not forget the frustration of the person living with dementia. The symptoms include screaming, kicking, elopement (i.e. wandering).  They present evidence of past studies demonstrating that activities can reduce psychotropic medication use. One must truly partner with the person to try this change for the better.

Now, there are whole books written just on choosing the right activity and adapting it for the person's retained abilities.  This article will introduce discovering the interest behind activities, with future posts expanding on more details (but start implementing now with your instinct).

In order to find meaningful activities, we should look at a person's entire lifespan or career, hobbies, passions, and interests.  This may sound like a daunting task, and it sure could be!

Wouldn't it be great to have a list of topics that help to discover personal interests so you could offer something to counter loneliness, helplessness, and boredom?

Enter the Farrington Leisure Interest Inventory (FLII).  Professor Marianne Smith and her colleagues at the Iowa Geriatric Education Center (IGEC) collaborated with Dr. Linda Buettner to adapt a version for use in IGEC's activity-focused dementia training program.

This checklist of over 150 items will allow you to ask your loved one or client about activities that may pique their interest. My hope is that YOU will consider using this free resource to discover things that will delight your loved one or client.

"But I know everything about ...my Dad, Mom, Husband, Wife, etc..." you say?

Consider these points:

1. The human life is so rich, complex, and interesting; there are likely things that we do not know about each other.

2. Perhaps the person living with dementia is on a Trip Back in Time to their childhood with hobbies that you do not know about?  How will you discover them?

3. You may be a professional Care Partner just meeting a client with dementia with little or no access to the person's family.

4. Perhaps you will uncover an interest that they never had a chance to explore in their busy life.

Professor Smith tells the story of a woman with whom she was reviewing the FLII. When they got to the topic of motorcycles, the woman told the story of how she traveled cross-country on a motorcycle.  Who would have known?!  Of course, she is probably not going to be riding a Harley soon, but there are other enriching activities that can be created around motorcycles of that era.

Not only will this survey help uncover topics of meaningful activities, but it could also create a stronger bond between professional Care Partner and client. As the Care Partner goes through the Farrington Leisure Interest Inventory, he or she will start to see the whole person with decades of life and experience.

This FLII asks one question regarding enjoyable music, which is a very rich topic deserving its own assessment.  I recommend reading my article on preventing and soothing agitation in dementia that includes a music assessment.

As always, be cautious of overwhelming the person living with dementia (or anyone). Break up the FLII over time if needed. Also, the music preference survey may be offered another time.

Now it is time to put this knowledge to use and create Peace with Dementia. Tell us about your experiences with meaningful activities and when you use the Farrington Leisure Interest Inventory.

If you appreciate this article, don't keep it all to yourself.  Please share so that more persons living with dementia can benefit!

Update: In the original version of this article, I stated that Professor Marianne Smith and her team at Iowa Geriatric Education Center created the Farrington Leisure Interest Inventory.  This was my mistake when I misread Dr. Smith's email to me. As Professor Smith says in the comments section below, she and her team "collaborated with Dr. Linda Buettner to adapt a version for use in our activity-focused dementia training program." This post has been corrected.

In Peace, 

Matt

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:

Kolanowski, A., Fick, D. M., & Buettner, L. (2009). Recreational Activities to Reduce Behavioural Symptoms in Dementia. Geriatrics and Aging, 12(1), 37-42. Retrieved May 1, 2016, from https://healthplexus.net/files/content/2009/January/1201dementia.pdf.

Power, G. Allen. (2010). Dementia Beyond Drugs: Changing the Culture of Care. Baltimore, MD: Health Professions Press. 

Smith, M., Buckwalter, K., Buettner, L., & Seydel, L. (2010). Farrington Leisure Interest Survey from Dementia Training to Improve Involvement in Meaningful Activity. The Iowa Geriatric Education Center, The University of Iowa: Iowa City. 

Smith, M., (2010). Non-Pharmacological Management of Behavior Problems in Dementia [iTunes U Podcast]. The Iowa Geriatric Education Center & The University of Iowa College of Nursing, The University of Iowa: Iowa City. Retrieved from http://itunes.apple.com.

Thomas, William. (1996). A Life Worth Living: The Eden Alternative in Action. Acton, MA: Vander Wyk & Burnham.