Saturday, December 31, 2016

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.

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 . 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 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.

Wednesday, August 31, 2016

Infographic: Using Individualized Music in Dementia

If you like this infographic, be sure to check out my full article on

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.

Monday, July 25, 2016

Can There Be Positive Aspects to Caregiving?

It is both common and understandable to speak of the caregiving experience as exhausting, unrelenting, and frustrating. The demands and sometimes un-cooperation of a loved one is enough to make you pull out your hair.

When discussing caregiving, the tone is usually melancholy, focusing on the caregiver strain, caregiver burden, loss of freedom, and lack of respite. While we must not ignore these aspects, it is important to step back and re-evaluate caregiving to seek the "silver lining."

What do you think?  I hope you will comment at the end of the article and let me know if you have reframed caregiving in a positive way. 

At the end of this article, I will link to a custom guide sheet for recognizing positive aspects of caregiving.

In June 2016, the peer-reviewed journal The Gerontologist published a 2015 study from Dr. Sheung-Tak Cheng, Ph.D. from the Hong Kong Institute of Education.  The study's main goal was to observe and record positive aspects of caregiving in dementia created naturally by the family, that is, with no help or coaching from the research team.

Fifty-seven primary caregivers, consisting mainly of daughters, but also spouses, sons, in-laws, and even one nephew, kept a voice-recorder diary of any "positive gains" over eight weeks.  Cheng defined a positive gain as “something good that happened to them because of the caregiver responsibilities” (p. 453). 

Cheng and the team inform us of ten themes after transcribing, coding, and analyzing the caregiver recordings. Here, I present a summary of the themes in my own words:

1.    Learning about Alzheimer's Disease (AD) or other related dementia offered "insight" into what to expect.  Whether attending a class, reading a book, or learning directly from the person living with dementia (PLWD), the caregiver felt better knowing what they may expect in the future.  This knowledge helped in acceptance of the disease and that the disease was causing the behaviors that cause so much frustration. The caregivers learned to not put undue and unrealistic demands on the PLWD.

2.    Having a feeling of duty in the caregiver role helped caregivers find ‘motivation' and energy through the day.  To be sure, this alone will not sustain a caregiver who ignores their needs.  The spousal caregivers who saw their role as honoring wedding vows or an adult child repaying their mother or father for childrearing noted this as important for a positive view.

3.    Caregivers in the study appreciated little things that their loved one did well. Persons living with dementia can surprise us all with what they can do and say. It is important to be grateful for these unexpected gifts

4.    Caregivers felt confident when committing to the role and doing it well. They felt confident as they became more experienced and handled difficult or frustrating situations well.  We are not born knowing how to care for someone with dementia, nor are we all born with the patience required. As with most jobs in life, we figure them out through trial and error.  The caregivers in the study are no different, and you are no different in this respect.

5.    Just as the clients in my care partner support group tend to express in each session, you cannot change the symptoms of dementia or the person.  You learn to be patient and learn to accept the repetition and other frustrating behaviors.

6.    Negative emotions and positive emotions go together in caregiving.  Caregivers found some success in feeding their positive thoughts more than negative thoughts, thereby influencing their positive emotions. It’s true that your thoughts influence your feelings, so it makes sense that reframing frustrations in a positive way will help emotions.

7.    “Letting go” of high self-expectations.  This was not common amongst the study participants, but it was suggested by some caregivers and the researchers thought it was important enough to include. Consider the idea that many people are good at their occupation (or hobbies) and hold themselves to a high standard of performance.  When starting out as a caregiver, they may have high standards, but a lack of knowledge and experience may prevent reaching high standards. 

8.    Caregiving brought them closer to the care recipient when normal circumstances would not have otherwise. The time spent together strengthened the relationship, offered time to reflect on the past, and fostered more understanding.  An example from the study includes one daughter who held a grudge against her mother since childhood but found peace in discussing it. 

9.    Study participants found strength in others.  Whether through caregiver support groups, other family members, close friends, and community groups, caregivers countered the isolation that strikes so many.  Caregiving can be a lonely job, keeping one away from social events, from hobbies, and from the workplace. 

10. Caregivers felt good when able to share comfort and experiences with other caregivers.  This is perhaps my favorite aspect of a caregiver support group, though it need not happen in a formal group. Caregivers ‘earn’ their wisdom and generally enjoy helping. They have outstanding credibility, having been there, struggled, and succeeded.

Allow me to remind you that these caregivers were not taught by the research study team. These are themes that the team observed as occurring naturally- things that the caregivers created.  Perhaps their thoughts will affirm some of your positive gains and inspire you to consider new positive gains.

Action: What you can do now is the reframe your perspective in a positive way, if we are not already.  This study shows potential. I hope that you will give these a try yourself.  Click here for a guide sheet to start looking at your positive gains!

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.


Cheng, S., Mak, E. P., Lau, R. W., Ng, N. S., & Lam, L. C. (2015). Voices of Alzheimer Caregivers on Positive Aspects of Caregiving. The Gerontologist GERONT, 56(3), 451-460. doi:10.1093/geront/gnu118

Wednesday, July 6, 2016

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.

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

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