5 Comments

New Report Puts Dementia in the Public Eye

By Michelle Seitzer / Posted on 28 November 2012

The biggest obstacle to dementia? People’s attitude. That’s what Dementia Without Walls, a new report from the Joseph Rowntree Foundation (out of the UK), says.

Changing perceptions about people with dementia was the focus of the report, along with exploring what features make cities dementia-friendly. The Foundation’s work caught the eye of Peter Jones, a retired architect recently diagnosed with early-onset dementia.

In this article from The Guardian, Jones shares his own personal experiences in poignant, often heartbreaking terms, and the reasons why he is grateful for the report and its essential goals.

He writes of his life post-diagnosis, “No one can understand what it’s like to have dementia unless they’ve got it. I would never have believed how complicated life could be. I don’t want people to tap me on the back and say ‘there-there.’ I don’t want special arrangements that will affect other people’s lives. I just want to be ‘dad’ or ‘grandad.’ I just want to carry on as near to normal as I used to.”

Jones also admonishes people to think before they attempt to empathize with a person who has dementia or Alzheimer’s (saying something like “Oh, I’m so forgetful too.”). They need to “realize there’s a fine line between the silly things that everyone does and the things that I do because of my dementia,” says Jones.

It is so important that people like Jones speak up and share their perspectives, share what life is like from their point of view. We need to hear more of it, and we need to do more than hear it. We need to do something about it.

I love these goals from the Joseph Rowntree Foundation’s home page, and I hope we can follow the lead of our partners across the pond as we seek to support, not isolate, those living in the merciless grip of dementia:

  1. Challenging attitudes, understanding and behaviours.
  2. Inspiring local communities to be more aware and understanding of dementia.
  3. Supporting the collective engagement of people with dementia.

 

Keep these words from Peter Jones in mind as you go through each day, undoubtedly encountering people with dementia though you may not even know you are: “It’s a cruel thing that people can’t tell that I’ve got dementia just from looking at me. They can’t see a big bump on my face so they can’t tell there’s something not right. They can only see what I do and say. In the early days I didn’t want people to know, but now I tell people if they need to know. When I’m outside my circle of family and friends, the biggest obstacle is people’s attitudes. I’m not worried about people’s reactions, that’s their problem not mine. I’ve got enough problems of my own. I can laugh about it now, but it’s hard.”

Let’s get to work, for the Peter Joneses and their caregivers who are all around us, in our families and communities. What first step will you take today?

There are 5 Comments about this post

  1. louise wright says,

    this is so true even in a facility we tend to tread softly softly with our dementia resi’s. there anger can raise very quickly even when your not being that way. its really about treating them with respect and dignity and not like children thats what they want too

     

    on 03 December 2012 / 9:14 AM

     
  2. Angela LeMay says,

    Challenging attitudes, understanding and behaviours by care homes? Why isn’t that mentioned. Carehomes will be needed despite all the rhetoric about care in the community because , at the very least,of respite. More emphasis needs to be focused on improving that industry, made up mainly by private businesses and ensuring people in carehomes are treated as worthwhile human beings with dignity and respect. People who are in that situation right here and now seem to have been forgotten in this rush to ensure care in the community. The two situations are interlinked.

     

    on 03 December 2012 / 11:06 AM

     
  3. @Louise, thanks for your comment. Absolutely — it’s necessary to exercise the same respect, awareness and sensitivity around residents in care settings who have dementia. So true: it’s vital that we treat them with respect and not like children.

    @Angela, that’s definitely an important component of awareness. No matter where we encounter people with dementia or Alzheimer’s, we need to demonstrate this attitude of compassion and respect instead of ignoring them or isolating them. You’re right though, care homes are still needed and necessary, so it is essential that the industry and the individuals who comprise it are well-aware of the needs of people with dementia and do a better job of caring for them in a sensitive way. Thank you for sharing your thoughts; I agree — the situations are linked and no matter where we live or work, there are people impacted by this disease who need support, respect and the preservation of dignity.

     

    on 03 December 2012 / 11:47 AM

     
  4. Jane Moore says,

    I’m so pleased you commented on carehomes, Angela. The stigma that surrounds them refers to prison being a better place. I.e. more exercise, fresh air and useful occuption etc. This is vital. Some sufferers are alone in this world and things need to drastically change to give the respect to our elderley that they deserve. Camelford, Cornwall and Torbay in Devon have this week made our purple angel logo a worldwide symbol for those who raise awareness of this disease and for people to freely use to demonstrate that they care. I hold the copyright and I hope the angel logo will be adopted by all who have an interest in finding a cure and supporting sufferers and carers.
    The logo can be downloaded from Dementia Aware, CDAA on Facebook and information onthe new Torbay website :http://tdaa.co.uk/?page_id=80

     

    on 03 December 2012 / 1:09 PM

     
  5. Thank you for sharing this information, Jane, and for your commitment to changing the way we respect those with dementia in all care settings.

     

    on 03 December 2012 / 2:28 PM

     
 

Do you have something to say?