Struggling to cope with dementia

Professor June Andrews talks about the benefit of talking to other people who have been along the same road.

Treat us as normal people. We’re still here, just a little slower and sometimes confused.

This quote is from the Alzheimer’s Disease International World Alzheimer’s Report 2012, which focused on the times and the places where awkwardness, humiliation and shame are associated with dementia. The report brings  to light some important views from family caregivers of people with dementia who if they were writing this would say:

  • I do want and need help.
  • I spend more time on caring than you think.
  •  I am isolated by my 24-hour responsibilities.
  • I am judged by the rest of my family for the quality of my caring.
  • I may not take the initiative in keeping up with our relationship.
  • I may not be able to afford some of the support that is available.
  • I have health and stress problems because I am a carer.

If people with dementia who were interviewed for the report were writing this they would say:

  • I am aware that you are afraid to talk to me.
  • I would like to be included in conversations.
  • I would encourage you to ask me about whether I know my own limitations.
  • I want you to ask me if I want you to help me remember words I forget.
  • I would often prefer you not to correct what I say, but show me you understand the meaning.
  • I am disheartened when you avoid or ignore me.
  • I am humiliated when you talk to my relative and not to me.
  • I don’t want to be a burden, so I hold myself back from things I’d like to do with you.
  • I won’t be taking the initiative as much any more.

As a friend who wants to help, you can do no better than respond to what the caregivers and people with dementia say. (Prof June Andrews commenting on the Alzheimer’s Disease International Report 2012)

This video made in 2012 outlines the issues of stigma.

Reviewed March 1, 2019