Care Homes For Younger People

[loggerman]

Hi, My wife is 54 years old. She has had dementia for approx 18 months. We now know that it is a Frontal type dementia. My has behaviour problems. For the second time in the last few months, she has been sectioned and is now in hospital.

A few weeks ago we made an attempt with respite. She had a "taster day" at a well run modern care home with kind staff. They brought in for the day, one of their activity carers to ensure that my wife had one to one throughout her visit. She was ok when we left in the morning. But just after lunch we had a phone call. We went to the care home and my wife was very agiated. Sadly when things get bad my swears a lot. The home had really tried hard to help her. But they had to consider the safety of other more elderly and frail residents.

There seems to be very few care homes in the country that solely look after younger people with dementia. We live in West Sussex. I would interested to know if anyone else has simialr problems.
Can anyone help me please.

 

[Brucie]

My wife's care home specialises in 'difficult' cases, and often these are younger people [that is, under 65 years of age] who have dementia.

Younger people with dementia either succumb to their condition quickly, or they do so over a long period. My wife has been in the home since 2001 and, while I thought we might lose her last weekend through a chest infection, now she has recovered, may be there for some considerable time more.

This is an impression of the ages of the female residents at her home at their time of admission.



You will see that none are as young an age as your wife. My own wife was under 50 years of age when her dementia began to show, but she was 61 by the time she entered the home.

Places in good care homes are prized because of the good care they give and that generally means that their residents live longer spans than they might elsewhere.

This in turn means that no places become available for new 'young' people who have dementia, and also, over time, the demographics of the home veer to a more normal dementia age grouping.

This is the challenge of homes for younger people - the residents grow older, and the home is no longer of the same category for other younger people.

 

[Sandy]

Hi loggerman,

As this is only your second post on TP, can I please start out by saying "Welcome".

I'm sorry to hear that your wife is now in hospital. Hopefully they will be able to make some of the more difficult aspects of her condition easier to manage - for both your sakes.

I noticed from your first post that your wife was taken off Aricept. There is some evidence that Aricept is not helpful for certain people with FTD:

As yet, there is no cure for fronto-temporal dementia, and the progression of the condition cannot be slowed. Drugs that are designed for the treatment of Alzheimer's disease, such as Aricept (trade name for donepezil hydrochloride), Exelon (rivastigmine) and Reminyl (galantamine), may actually make symptoms worse and increase aggression.

from: http://www.alzheimers.org.uk/factsheet/404

The best website that I have found to explain FTD is one by the Medical School of the University of California at San Francisco:

http://memory.ucsf.edu/ftd/

There is some evidence that another anti-dementia drug, Ebixa(Memantine), can be helpful for some people with FTD. It might be worth asking your wife's consultant about this.

You are right about the small number if homes able to cater for young-onset people with dementia. The staff at the hospital should be able to help you identify which places might be the most appropriate.

You might also try contacting your local branch of the Alzheimer's Society to see what support/resources are available locally:

http://www.alzheimers.org.uk/site/custom_scripts/branch.php?area=true&areaCode=EASE

Take care,

 

[loggerman]

Thanks for your help

Thank you for your replies Brucie and Sandy. I already get good support from our local branch of the Alzheimers Society. I have also become a volunteer with the branch. Unforunatley despite the good efforts of the branch we are unable to find a care home that specifically cares for younger people. The nearest is in the east Kent.

Thank you for mentioning Ebixa. I will talk to the consultant about it.

Things have moved on since my posting. Our consultant has twice mentioned to me that I may have to consider that my wife may not be able to come home and may have to go into care. This has made me more determined than ever to the opposite. After my wife's first admission to hospital last December we put together a very good care package, with care at home and dementia day clubs. This is funded by Self Direct Support which works very well.

I am now doing the same again, but with an increased level of care at home. I will be discussing my plan with our consultant and our social worker.

I have also attended a Mental Health Consultation Meeting for the proposed changes for Mental Health Services in West Sussex. The lack of services for younger people with dementia was discussed and the NHS acknowledged this and have said that they will take steps to address the problem. We will have to wait and see what happens.

The meeting also mentioned Admiral nurses for West Sussex. Both the NHS and Dementia Uk are doing some work at the moment on the provision of an Admiral Nurse for West Sussex. it is something that I and other carers desporately need.

I was interviewed after the meeting by the West County Times and an article is in todays paper.

Via my facebook page I am also using every opportunity to raise awareness of dementia.

Sandy. I am new to talking point. Some of the things I have just mentioned are probably more appropiate for some of your other forums. Over the last few months I have gathered together a lot of information and contacts and would like to help others. Perhaps you could suggest which of the other forums may be useful

 

[Sandy]

Hi loggerman,

It sounds like you are well and truly involved in dementia care, not just for your wife, but in the local area.

I tried finding the article on the West County Times website, but had no luck. You can always post links to that sort of coverage as most members of TP like to see how others are getting the word out to the local press.

Also, you could could put a link to your Facebook page, for example it could be part of your signature file if you wanted (can explain in more detail) or as your home page URL in your Profile page.

Have you checked out the Clive Project? It's based in Oxford, but it is one of the best organisations dealing with young onset dementias:

http://www.thecliveproject.org.uk/

It's good news if you do get a local Admiral Nurses service. They do also have a national support service via telephone or email:

http://www.dementiauk.org/what-we-do/admiral-nursing-direct/

I'd be interested to hear more about the resources that you've collected. You could PM me with more details.

There are different areas of Talking Point (sometimes called sub-forums), but overall, there is just one forum:

http://forum.alzheimers.org.uk/index.php

For example, some people will put information about something they found useful in the Resources section, but it may just as easily go in the Support area or the Younger People with Dementia area.

Take care,

 

[Norrms]

Hiya

Hiya loggerman and welcome to TP. i have just been readingh your posts and having early onset Alzheimers myself at aged 50yrs old (now 52yrs old) i also have the worry of how my darling wife and family are going to cope when i get worse at such a "Young AGE"
i ALSO WRITE FOR THE "CLIVE CROJECT" WELL, I SENT IN A FEW POEMS AND TESTIMOINIES ECT, ooops caps lock on sorry LOL, and i live in Torquat in Devon where there are next to no facilties for young sufferers. I also spend most of my time raising awareness and if there is anythingg i can do to help, please just ask, best wishes, Norrms and family xxxxx

 

[loggerman]

Hiya

Hi Norrms,

Nice to hear from you. It's a really cruel illness. You are younger than my wife. Just looked at the Clive Project website. Wished we had something like that in West Sussex. I also spend a lot of my time raising awareness, mainly on my facebook page.

We are lucky in having a very good Local Alzheimers Branch. They have a club 2 Sundays per month. West Sussex Crossroads have "Neils Club" which is for people with Early Onset Dementia. My wife go's there every Wednesday. My wife also go's to a club called "Careful Hands" 3 days per week. So very lucky here.

We have a very good Social Worker. Our funding is now provided by "Self Directed Support" which works very well.

Have also had battles with Department of Work and Pension over allowances.

If I can be of any help to you, please let me know. I have found a lot of information during the last 18 months.

Take Care
loggerman

http://www.facebook.com/daveverrall

 

[Norrms]

Hiya

Hiya, just sent a friend request to your facebook page, hope we keep in regular contact, best wishes, Norrms and family xxxxxxxxxxxx

 

[danny]

Hi,very interested in your work.
I have been asked by our local PCT to develop a support group etc for younger people with dementia.I will check out your link.

Best wishes,Angela.