I’m working on what I believe are the true needs of a person with dementia, and would love your contributions. There is so much written on this topic by professional experts, and very little written about it by the real experts, that is, the people with dementia. Mostly, I think people with dementia need others to accept us as we are, each day, and to change themselves to accommodate the new me. The symptoms of dementia change without notice, offering us an ever-changing new truth or reality. We have little or no control over this, and so feeling truly valued, loved, and accepted, and that we are still contributing to the world and the lives of others and ourselves is key. Living engaged and meaningful lives, not just sitting in activities rooms playing Bingo or sitting alone in our rooms (if in residential care) or home alone, but a more nurturing and individualised style of support and care. I’ve listed a few things, in the order of importance to me, but welcome your comments and additions to the list, as well as your ratings of most to least important.
- Your willingness to change and accept the ‘new me’
- To feel loved and valued
- Acceptance of my ever changing ’new truth’
- Understanding
- Support to live an engaged and meaningful life
Kate
I’ve spent quite a bit of time thinking about this and I’ll be spending more ….. so when I haven’t replied it doesn’t mean I have forgotten!!
but purely thinking about it …… it’s a pretty “big” question …..
Thanks.. I look forward to your answer!
I applaud these ideas. Of course that is what family and friends would like to be able to do. My (very selfish but nonetheless real) problem is that I am constantly dealing with my own loss of my sister (with dementia, unable to express herself, in a care home) and it IS a bereavement. My feelings of loss and misery on her behalf get in the way of being the accepting person she needs. I said it was selfish.
I LOVE your honesty, and applaud your acknowledgement and openness about your own grief. Not selfish at all really, just another side of the same coin. With love and hope.
Here is another comment I received via email…
“My order (off the top of my head) would be:
2, 3 (does “new truth” equate to “new reality”?), 1, 4, 5.
A suggested addition which is important to carers is “To feel safe”
A great idea, Kate. I hope you get the feedback you deserve.
Love, M”
I don’t mean this in a hurtful way, but I think your apsirations are only that.
For professional carers. I think what you suggest is spot on, ie, the health care professionals, clinicians and nursing staff.
For family, I can envisage that over time they will make that transition in an evolutionary manner, but it won’t be without difficulty and a lot of effort.
For friends and colleagues, for many, that will be a several steps too far. Context is everything for such relationships. Some will be able to make the adjustments you suggest, but many won’t be able too. It won’t be through any malice, intolerance, etc, just they won’t have the ability at the time it is needed. Empathy alone won’t be enough for those who can’t make the adjustments.
Some may have had family who they travelled this path before, and hence they will have the skills to make the adjustment, but even amongst those, it maybe too painful a path to travel again, bringing forward sad memories, etc.
This is just intellectual thought! I maybe totally wrong, but I wouldn’t want you to establish unrealistic expectations, that could make the situation worse.
Paul
As always Paul, I enjoy your feedback and intellectual thought.
I agree, they are aspirations for not only professional workers, but family and friends. You are right, many people have very valid personal reasons for not wanting to engage more deeply, or those who simply can’t or don’t want to make the adjustments required. That’s life! As far as having expectations that make it worse, there is not much that could happen to me now that would or could make things worse, other than one of my loved ones dying. I’ve always been altruistic, and dreamed for greater things, so have come to accept occasionally I am hurt when they aren’t met! Kate
I have to agree with both of you on this one. I agree that, on one hand, many of the things you have listed just simply won’t be possible for every individual to achieve (whether through incapacity, the family/social situation or other reasons), but on the other hand Paul you have to aim for the stars to land on the moon. I think the list you’ve put together there is definitely something that, at the very least, should be strived for whether it is realistically achievable in every case or not.
I’ve been trying to think about it in the same way as Maslows Heirarchy of Needs, and I am in the process of developing a “Dementia Hierarchy of Needs”.
STRONGLY agree with numbers 1, 2 and 5.
Number 5 in particular made me think of this quote I really like and might be on point, “It is not what we get. But who we become, what we contribute… that gives meaning to our lives.”
Thanks for your feedback Josh.