Experiences of care for someone who has dementia, at home

[Brucie]

It seems a little strange for me to be posting in the Researchers area of TP, as a long-standing member of the forum, but it seemed to be the appropriate place in this instance.

Some background: during a long time caring for my late wife Jan, who had mixed dementia - Alzheimer's and Vascular - I decided to try and bring something positive from what was a very chaotic experience. So I did a fair amount of work to help Alzheimer's Society, in the media and on this forum.

As a result of that, and shortly after my Jan had passed away in 2010, I was contacted by someone at the Department of Health, who asked if I would be willing to tell members of an "Awayday" meeting of their Directorate about our experiences.

This I did, and as a result of that I was invited, some time later, to become a member to the Prime Minister's Champion Group on Dementia. We're in the final year of its initial 3 year existence now, and a new subgroup has been formed to look at Dementia and Care in the Home. I am a member of that group and, following a first meeting recently, I'm very excited at the makeup of the group and also the degree of agreement within it.

Most members represent professional organisations that provide care, or represent professional carers, but at least four of us have cared for a loved one who has/had dementia, at home. My best role on the group seems to be to inject practical experience, from the family viewpoint, of dementia care services, at home.

That is why I'm posting here.

I have experience of three people who are/were living with dementia, and what was/is needed, and what they had/have or didn't have.

I'm very aware that there are many members of TP who have their own experiences, good and bad, of managing care for a loved one at home.

However, I'm not just going to restrict my input to this subgroup to what needs to be done for/by service providers. Care at home requires good practice not only be them, but also by family and anyone else involved in any way. I'm well aware that unknowing behaviours by family members can make the situation worse than it need be.

Everyone in the equation needs to be "Dementia Smart".

So, what am I after?

Certainly not a rant, no matter how strongly you may feel. Basically, short examples of good or bad practice by those who come in to help with care. What has worked especially well? What has been totally counter-productive? What is particularly needed to make care at home successful?

I will pull anything posted here, or sent to me by PM, into what I present to the subgroup.

Can you let me know here if you would like to help me in this? I believe it is an extremely important aspect of living with dementia.

Thanks!


P.S. I've checked with the moderators before posting this!

 

[Izzy]

Good morning.

As you can see I am in Scotland so my experience is slightly different. I wasn't sure whether to respond or not because of this. The free personal care for the elderly which is available in Scotland is central to the success of our situation.

I cared for my mother who had Vascular Dementia and lived with us until her death in 2011. My husband has Alzheimer's and still lives at home with me.

To begin with we had agency carers coming in at specific points through the day. This did not work out for us. There was no consistency of care which was something my mother really needed. No matter how good the carers were the problem was that she couldn't develop a relationship with them.

Eventually our Social Worker suggested that we move to the Direct Payment scheme. This has made all the difference. I have been well supported by our local Carers Centre which I believe was originally the Princess Royal Trust for Carers. They employ a dedicated support worker for Direct Payment clients and she helped me set everything up.

We have now used Direct Payments for around two years. I employ two carers who share the care of my husband. The system is flexible enough to organise the care to suit me. As a result I use the hours over four days in the week. I have no carers in at the weekends and my husband attends a Day Centre one day a week. These two carers know my husband well and have developed a routine which is consistent and designed to meet my husband's needs. He knows and trusts them so his daily experience us a very positive one.

For me this is what makes care at home successful. It is consistent responsive to changing needs. I know that as my husband's needs change the care will change to meet these. I hope that this will mean that he will stay at home as long as possible.

 

[LYN T]

Hi Bruce

Here goes-I hope it isn't too negative

My Husband,Pete, has bi-polar and at severe stage AD. Since June 2012 he is in a CH

Good things-Day care Centre.Where Pete went the staff were lovely and really allowed him to keep going there even though he was agitated and violent at times.

Bad things (sorry this list is long)

I'm in my 50's I was told that most services were aimed towards carers who were physically frail-Ok so I'm physically fit but I still couldn't help my Husband get in/out of the bath as he's a lot taller/bigger than me.It took 5 weeks for OT to come for an assessment and another 2 weeks to get a bath seat (which was never installed)

SW's don't know what carers are entitled to. P's SW didn't know about the Carer's voucher system for home sitting/respite

Sometimes the people involved in arranging care are not trained in Dementia. OT came breezing in and said to P 'what are you reading Mr T?'-P hasn't read anything for 3 years. The books were there waiting for him to tear up

CPN-Take an aspirin for your Carer's stress Mrs T.(that's after a meeting with me asking for help) Training in sympathy (!) and listening would help

The length of time it takes to get anything arranged.

The cost of help-due to Central Government funding cuts the LA put up the cost of social care 300% My Husband's day care went up from £29 a week to £102 overnight. Ok we could pay but I know of plenty of people who cut down the sufferers attendance so increasing the possibility of carer burnout.

Izzy always states how fortunate she and Bill are with the care offered for people in Scotland (if fortunate is the correct word to use when your partner has AD) Why is this not rolled out across the whole of the UK.

Sorry Bruce-verging on a political rant there

Good luck

Lyn T

 

[Ann Mac]

I'm in North Wales, and have my Mum in law, with mixed vascualr and alzheimers, living with us.

A few people have commented on my positive posts about the service in this area - they have been really quick to respond to needs, and - compared to what I've read elsewhere - have been excellent at following through on providing the support requested.

I believe this is because we are offered a service where the memory clinic, social workers, occupational therapists and CPN's appear to have bases in the same location, and this allows them to communicate really effectively - if I let the CPN know that Mil is experiencing something that comes under her remit (i.e., an increase in early morning and distressful hallucinations) then I know that she will pass this info on to the SW, who will invariably follow this up with a phone call at least, just to see how Mil is. In the same way, the SW has spoken to the OT, the memory clinic to the CPN, and so on - it gives us a 'joined up' service, that really, really makes a difference. They also seem to know well the providers of other services in the area - such as day care centers - which meant that when day care was first suggested for Mil, they knew - having met her several times - which center would probably offer the most suitable environment for my Mil. And I think this cut down on the time taken to get a day care place sorted.

The failing point in our area is support provided by agency. Firstly, they are centered around profit, not people. The 'competition' between agencies leads to more and more cost cutting measures, and demands on the employed carers, to deliver at the cheapest price, instead of delivering on the best service. Poor work conditions and pay leads to high turnover of staff, impacting on continuity of care - something obviously important to both the person with dementia and their family.

Extensive mandatory training in dementia care, would also help - I was appalled at the 2 hour voluntary dementia awareness course I was offered by just ONE organisation, when I worked as a carer myself. It focused on the causes of alzheimers and possible ways it can manifest, and that was it. How on earth can support workers be expected to provide the best support without training?

 

[lexy]

deleted

 

[Grannie G]

Hi Bruce

I will let you know about my experiences by PM so I can name the care agencies.

Best wishes.

 

[Daisy48]

Hi Bruce
My sister and I have just lost dad nearly 3 weeks ago.He had AD .

The two bad things we encountered were;
Social services refused any help at home,they visited twice and dad was happy and smiley
on both occasions.We asked for a morning visit to make sure he'd got up and had a hot drink and meds but no.
So between us my sister did as much as we could despite having families and full time jobs.
We can't believe how we coped.Every week there was a problem such as dad burning his kettle out and tripping the electrics,defrosting freezer,losing keys in shops.The list could go on and on.
After a uti dad was admitted to hospital.Big problem number two.
Dad was in hospital for 7 weeks and was moved 6 times.Twice we visited and his bed was empty and no sign of him...he'd been moved!Between us we visited everyday and yet no one had let us know.
Individually the hospital staff were lovely but collectively they don't understand Dementia.
I could write a very long list of things that we saw or that happened to dad.
On the plus side dad had to go into nursing care afterwards.Someone at the hospital couldn't believe that we didn't have any help and no care package.
We were blessed with the nursing home.Dad was loved.My sister and I were involved in all aspects of dad's care and helped form a forum for fundraising,joining in with activities etc.
More importantly dad was safe.

 

[Bree]

Hi

After MOH was diagnosed with Alzheimer's we had visits from so many different people, from all sorts of organisations, and whilst they all came and talked, no-one DID anything. Yes there are groups for carers, and meetings etc. but who cares for your charge when attending ?

At last I have vouchers from Social Services so that I can have some time off, and that's great, but that's all we get. It would help if there was more action rather than words.

 

[lexy]

deleted

 

[Brucie]

Hi everyone,

Well, thanks so much for your replies. Really helpful.

Izzy, I want to illuminate the Champion Group Subgroup with examples of good and bad experience in caring at home - wherever it is experienced. If something works in Scotland, then why should it not in England, Wales, Northern Ireland, or anywhere else?

Of course funding is an issue anywhere, and I'm not really looking at that. I'm trying to put forward outstanding examples of what works and what does not, what helps and what does not, so we can try to ensure that, whatever the financial and organisational side, what CAN be provided is of the best and most appropriate quality.

Lyn T - I fully appreciate your points. I cared for my Jan while trying to hold down a full time job (impossible thing to do) and care was not geared to someone in our situation - so I'm up to speed on that. Your example will help me underline the breadth of need there is.

Everyone else who replied - I'm not going to answer now beyond saying thanks - because I want to review all of the responses in detail and coordinate their various points.

I should underline that WE are the real life carers, and WE are the ones who can show whether the professionals are doing their jobs or not. WE can educate the system as to what WE need.

To be frank, nothing may come of it, but at least we are trying and I feel privileged to have the opportunity. At every stage in the Champion Group I mention TP, and I really don't think any of those involved has taken on board just how crucial a resource this is - including members of AS.

Thanks, and please keep the information coming, here or as Sylvia is doing, by PM.

 

[BeckyJan]

Hi Bruce,
I really want to contribute but feel pressured at present. Also it is now 5 yrs since David was at home - we had carers here just for 6 mths prior to his moving to a NH and its hard to recollect those horrendously difficult days.

What is your deadline for responses?

 

[Brucie]

Update

Hi everyone,

Thanks again to those who contributed experiences of care, at home and generally, as a result of this thread.

The first meeting since that time is due this week and I have collated the various experiences and forwarded them to the person who will be running the next meeting.

He has sent me the following reply:

"Thank you for sending over the set of collated notes and experiences. I think this will provide a very useful element of our discussions on Thursday, and I will make sure the group has copies of it to read. It is essential that the work the subgroup produces places the carers and service users at the heart of the issue, and this document will certainly help us do that."

I submitted 16 pages of notes for distribution.

 

[Izzy]

Thank you Bruce.

 

[Brucie]

A quick report after today's meeting, where I presented some of the stories that TP members had let me use.

As I had so many stories, I couldn't use them all for this meeting.

I was delighted to be given so much time to enlarge on aspects of care at home, and good and bad care provision. These contributions provide an unique insight into real life caring for the members of the Subgroup, something they are very grateful for as it injects reality into discussions.

I am still happy to receive more information, by PM or in this thread, about examples of both good and bad care in a person's own home environment. If I receive any more, please be sure that you are happy for me to use it, anonymously, for a future meeting or as part of the Subgroup's report, which will be prepared in the Autumn.

For those who have already sent me material, please let me know if you are NOT happy for me to provide it as part of the report. No names will be used, whether of the patient, or the family member(s).

I wish I could describe adequately how impressed I am with those who are present at the Champion Group and Subgroup meetings, and the range of experience and content that are represented. It will of course remain to be seen whether all the good work will be acted upon once the reports have been published, and recommendations made. Whether or not that happens on a national level, I am convinced that the mere fact that we are all discussing such a breadth of care for dementia will lead to changes in the way things are done.

A final point - for the first time, Talking Point was brought up several times in conversations - but not by me! That was great.

 

[Bythspirit]

By all means try and help us carers at home, but in the end we cannot always cope and what is needed is good purpose built care homes with fully trained staff, so that our loved ones are safe and well looked after.