So sad but true What do you think?


Registered User
Jun 27, 2006
The financial barriers would be immense as well. Dementia is such an open ended diagnosis. Most people who make use of hospice have a fairly well defined life-span, counted in weeks and months while people with dementia may continue with the disease for years. I do know someone in the US who removed their mother from a nursing home when she got to the point where she was no longer eating much, and got hospice care at home - the hospice nurses would come multiple times a day to bathe her and change her and allow my friend to run errands. It was a "good death" or as good as such deaths can be expected to be, but I doubt they would have got hospice if the doctor hadn't been prepared to stand up and say "6-8 weeks max"


Registered User
Mar 7, 2004
Thank you for the link, it is certainly food for thought.

Whilst, during the past six years of my involvement with AD, I have heard of many deaths, not one has been in a hospice.

I think it could be partially due to the point usually put:
"you do not die from AD, but with AD". I have, in the past, been guilty of saying same myself. Not any more.

It is one of the very, very few illnesses that certainly will end in death, and yet not acknowledged as such.

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
Toronto, Canada
It is one of the very, very few illnesses that certainly will end in death, and yet not acknowledged as such.
Connie, you are so right. I get angry when people say that my mother won't die of AD. I tell them "Yes, it will kill her and here are some of the ways in which it may happen".

A week after my mother was diagnosed, I went to a seminar about AD. The speaker (who turned out to be my mother's specialist) was very direct and blunt - his words were "Alzheimer's is a terminal disease".


Registered User
Jan 4, 2008
east sussex

When my husband was in the last stages of his life i asked the local Hospice if they would take him. i told them he had been diagnosed with Vas Dem and they said that they did not take dementia patients. So i have to agree that in some cases one is looked after with more compassion if Cancer is the illness



Registered User
Mar 7, 2004
Cynthia, a blank refusal is so hard to take, and must still be very raw, so thank you for sharing.

Maybe if more people asked..............

Who knows?


Registered User
Mar 23, 2008
coast of texas
these past few weeks have been eye- opening for me. The article rings so true. My grandmother had hospice when she died and now her daughter has alzheimers and hospice is not an option. The one thing I truly regret is that the hospice nurses are so well trained and in tune with those last days. If only home health care nurses could be trained in the same way. I know the caseworker (RN) that comes to the house feels the same way I do. Problem is by the time an AD patient would qualify Hospices' way of helping the family wouldn't have the time to work it's wonderful magic.


Registered User
Mar 24, 2008

I work as a trainer within the care industry, I try my hardest to get the carers to understand what people with dementia need, TLC being the number one priority, it is so hard to put across sometimes that people with dementia are changing all the time, that they are not the same people as when they first come into the home, or if they are domicillary workers they need to support the relatives as well, I feel I know a little of what I am talking about as my Dad had Alzheimers when he was 62 and died when he was 65, my Mum didnt get any help except to be told "she could have inco pads for him if she liked!" Some help that was! I know that we are governed by that great god money but there must be some way we could make life so much beter foe people with dementia and their relatives and friends.

Grannie G

Volunteer Moderator
Apr 3, 2006
Thank you for that Jacqueline.

What a relief to know there are some out there who do not see those with dementia as not worthy of respect.