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Viewing Dementia Through the Eyes of Grandchildren

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We began to see the changes in my spouse before we had a grandchild. Those were glorious days of appropriate comments, empathy, and mostly the man we remembered.  Our grandchild came and we reveled in our time together. As she grew, things changed subtly but change, they did. Now she is a wee person. A full-fledged “kid”. We live nearby and see her at least once a week.

In the last six months, the granddaughter’s growth in empathy, in expression has progressed while Gramps’s has regressed. What results is a lot of interpersonal drama—much like two children.

My granddaughter breezes by Gramps without acknowledging him when we do afterschool pick-up. Her excuse, Gramps is acting creepy.

My granddaughter’s experience is not unique. Research shows grandchildren who are part of the care constellation have emotions of guilt, frustration and sadness about the changes they see in their grandparent.1 This study clarified the behaviors of their grandparent are misunderstood by peers. Within the children in the study there was a fear of the grandparent losing memories of their shared experiences.

For adolescent grandchildren, one study clarifies that although there are negative feelings about the grandparent’s worst qualities, the adolescents attributed it to dementia rather than to the grandparent’s personal characteristics.2 As the child grows, their understanding and empathy grows.

A focus group of scouts aged 9-12 expressed a need for education on how to relate to a person with dementia as well as an awareness that they are “still people”. This astute study group also felt desire to better understand the unpredictability and differences in dementia.3

How do we do that? On the rare times my granddaughter and I are alone together, we talk about Gramps’s brain being different. Gramps being special. Book help.  Books like Why Did Grandma Put Her Underwear in the Refrigerator by Max Wallack & Carolyn Given. Or Weeds in Nana’s Garden by Kathryn Harrison.

All you need to do is an internet search for children’s books about dementia and you have a selection of at least 30 books. Most of them are for elementary level, but some are for teens like Newspaper Hats by Phil Cummings or Forget Me Not by Nancy Van Laan & Stephanie Graegin.

Perhaps you had to share the birds and the bees with a child at some point in your life.  It was an awkward conversation, often assisted by a good book. Well, here we are faced with an even more difficult topic replete with grief over changes and loss. Let a book or two open the door.

Not all books on dementia are well written or capture the individual changes happening in your network. You may have to take a trip to the library and read of few books on your own to help you find the book which helps you understand Gramps.

Byline: Cate McCarty, PhD’s background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia. Her business is Dr. Cate, Dementia Coach. Cate is currently the care partner for her spouse who has early-stage dementia of the Alzheimer’s type.

Footnotes

1Venters S, Jones CJ. The experiences of grandchildren who provide care for a grandparent with dementia: A systematic review. Dementia (London). 2020 Dec 29:1471301220980243. doi: 10.1177/1471301220980243. Epub ahead of print. PMID: 33372548.

 

2Celdrán M, Villar F, Triadó C. Thinking about my grandparent: How dementia influences adolescent grandchildren's perceptions of their grandparents. J Aging Stud. 2014 Apr;29:1-8. doi: 10.1016/j.jaging.2013.12.004. Epub 2014 Jan 5. PMID: 24655668.

 

3Baker JR, Jeon YH, Goodenough B, Low LF, Bryden C, Hutchinson K, Richards L. What do children need to know about dementia? The perspectives of children and people with personal experience of dementia. Int Psychogeriatr. 2018 May;30(5):673-684. doi: 10.1017/S1041610217002022. Epub 2017 Oct 2. PMID: 28965499.