Provision of Care

[Katie19]

Hi everyone this is my first post. I have been reading the other posts on the forums for a while though. I am a medical student and am currently trying to put together a project on AD, I also have some personal experience of the disease as my beloved Gramp was diagnosed about a year ago ( which is really why I decided to do the project!)

Was just wondering what people thought about the provision of care in their area for Alzheimer's patients especially the provision of places where patients can go just for the day to give carers a break.

What kind of activites / facilities do they have? Do the patients enjoy going? Does anyone think there is a lack of facilities or that the facilities do not reflect what is wanted by the AD patients themselves?
Thanks k

 

[Brucie]

Hi Katie

welcome to TP.

From my experience with my wife, who is now in full time care:

- she is an Early Onset person, and there was no facility to cater for such people in my area at the time she needed it [1995-1999]

- respite facilities were so rare as to be extinct, so we never had that - the one place we tried had a 6 month advance booking requirement, which was hopeless

- all day centres catered for older people with dementia - many of whom were in a less disturbed condition [maybe more advanced in some ways] than my wife. We were banned from the day centres

Broadly speaking - from my viewpoint - facilities are [perhaps have to be] geared towards the majority of 'customers' and thus tend to preclude early onset patients.

Perhaps things have improved in the past few years, but I am sceptical.

I had no alternative but to do everything myself, lock all the doors and stay in with her for the last six months she was at home with me.

 

[daughter]

Hi Katie,

We were able to obtain Day care for my Dad when he was still living at home a couple of years ago (he's 82 now). He went twice a week and enjoyed it once he was there, but Mum used to get quite stressed before he left. She wouldn't tell him until the last minute in case he said he didn't want to go, and then it was a bit of a mad dash to get his shoes/coat on and out the door before he had a chance to change his mind!

I say he enjoyed it, but this was towards the end of his time of living at home, when he started to get aggressive and there were a couple of episodes at the Day Centre, where he was sent home early. It did give Mum a break, however, before it all just got too much and Dad went to live in a Home.

As an aside, I do think that when dementia is diagnosed, there should be some kind of leaflet available for the doctor to hand out, containing a couple of telephone numbers of organisations, especially in the immediate area, and the type of support they can offer (day care etc.) I think it would be more effective than pinning them up on a notice board. People like Mum, having just heard the diagnosis, are hardly likely to feel like taking out a pencil and scribbling down telephone numbers in the surgery!

I felt Mum was just left to struggle on until my sister and I started to look around to see what was available. If Mum had been on her own, she would have just attempted to carry on regardless until something snapped. In which case, if she'd had some numbers readily available, she might have been tempted to just give them a ring one day in desperation.

Good luck with your project!

 

[Katie19]

Thank you both!

Lovely to hear you views ont the subject. I know from personal experience we had to hunt around for places and contact names when it became obvious that my Nan needed a bit of a break.

I gather from reading other postings on the web also and Bruce your experience that there may be a gap in the service provision for Adults with early onset dementia.

Hazel - I know that my Nan appreciates the rest she gets, the few hours to herself while my Gramp is at the day center, she does however worry about him and says it is very strange having such a quiet house. I think it is also good for him too, to spend time with people other than my Nan and the rest of us!