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.
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