One of the hardest things people living with dementia and their caregivers have to cope with, is the disappearance of family and friends from their lives after there has been a diagnoses of dementia. Unfortunately I frequently hear from people that this ‘disappearance’ felt worse than the diagnosis did at the start and placement into long term care later on. What is happening here?
Now this certainly doesn’t apply to all situations, and thank goodness for that. It however does apply to an alarming number. Thank you to the families and friends who never went anywhere, who grabbed the bull by the horns and got the job done, making the best of a trying situation as a team. This article speaks to those who have decided it’s easier to look the other way or to not look at all, “it’s too hard to see my friend, father, mother this way”. “They wouldn’t want me around anyway, it’s too embarrassing”. Yes that’s right, “too embarrassing” Friends, not good enough!
Let’s break a minute from this theme and consider another angle. I hear all the time that people don’t want to be a bother to their children and friends, as they have busy lives and families of their own. This mindset is across the board when we consider a senior population that has a higher rate of dementia. We also need to consider people with dementia may no longer have the ability to make phone calls, know when they last spoke with friends and loved ones or be able to coordinate visits and quality time. In these moments people living with dementia just run with the mindset that they don’t want to be a bother, what’s more accurate however is they don’t know how to reach out. At this point they must lean on family and friends to reach out. Not out of convenience, but out of necessity. Folks with dementia need lives that are engaged and stimulated. They require visits from family or phone calls just to check in! This is an issue that people living with dementia cannot resolve on their own.
Being connected and valued by others is certainly part of being human (living with dementia or not). This idea of social belonging has been around for a long time as seen in Maslow's hierarchy of needs. Abraham Maslow was an American psychologist who created a theory of psychological health. There are five levels to this hierarchy and social belonging finds its place right in the middle – friendship, intimacy, trust, acceptance, receiving and giving affection and love. It should be pointed out that deficiencies within this level such as neglect, shunning and isolation can affect a person’s ability to form and maintain significant relationships.
As you can see, social belonging is an essential component of quality of life for all of us, however in the dementia world it’s even bigger! Dr. Maria Carney a geriatrician at Northwell Health in New York states: “more and more elderly people are becoming isolated and as a result unhealthy. This becomes a cycle – isolation, loneliness, depression, illness” Not a very good outcome for people living with dementia as more and more of our senior population are. The lack of interaction and social correspondence is devastating!
Developers of the Best Friends Approach to Dementia Care, Virginia Bell and David Troxel have co-authored an Alzheimer’s Bill of Rights. This Bill of Rights lists twelve points and three of them directly relate to the topic at hand. It states: Every person diagnosed with Alzheimer’s disease or another dementia deserves:
- The right to experience meaningful engagement throughout the day.
- The right to have welcomed physical contact, including hugging, caressing, and hand-holding.
- The right to be part of a local, global, or online community.
Lastly friends I would like you to check out a few links below. The first one will take you to a short video by a gentleman living with Alzheimer’s, Alan Beamer. The video is
titled ‘Drop In on Friends with Alzheimer's’. It has a powerful message and it has gone viral, with over a million views. https://www.youtube.com/watch?v=ZnNJAUeUyXI the second link shows the support and impact Alan’s video has made on other people living with dementia. He is not alone! https://www.youtube.com/watch?v=h6NSOpafrC4
If you have been moved by this or perhaps you feel I’m speaking to you, what can be done? The majority of people who struggle with this question simply need some guidance, a little education. The Alzheimer Society of Lanark Leeds Grenville can help with ways to connect! We can help you gain an understanding and explain the benefits for you and those living with dementia. You certainly are not alone, you have an opportunity to get involved. Please don’t look back in the future and wish you did. Seek out your family and friends, they are right where you left them!
Sean McFadden is the Education and Support Coordinator with the Alzheimer Society of Lanark Leeds-Grenville