Dementia- What support is available to families coping with dementia?

[hongkongzoe]

My FIL is in his late 70s and is showing signs of dementia;mainly confusion and memory loss. Thinking MIL is his sister who he hasn't seen for years, wandering round the house looking for people who aren't there etc.

MIL is in denial that there is a problem, (she is very active, has great social life and is completing an arts degree) but various things have happened recently that have made us all realise that we need to do something.

Has anyone had any experience of caring for a relative with dementia? What steps should MIL and FIL take? Is there any support available for families coping with this?

PILS live up north and rest of the family live down south. I just want to be able to support them and offer them advice/ information as they accept the situation iyswim.

sorry about your fil's dementia

have you read the nhs page ondementia

Best place for advice would be local gp/district nurses or help the aged

You mil may be eligible for some help caring for him

Thanks ggirl. The NHS page is very informative. I have advised my MIL to go to GP with FIL as I guess that would be th best place to start.

The Alzheimer's Society website is very good.

The factsheets are particularly useful. Each focuses on a different area.

There is support available, and it's worth finding out what is available in their area.

Disclaimer: i started writing this post 35 minutes ago before my phone rang, so i have no idea whether anyone else has already pointed you in that direction.

btw, the alzheimer's society are useful for all types of dementia, not just alzheimer's type.

NGDB (great name btw) Thanks for that link too, its very useful. I am going to try and find out what there is for them locally, it's just not so easy when you are 300miles away!

I knew I'd get better info from MN than if I googled!

It's horrible isn't it?

The Alzheimer's Society are great, they have local reps who can tell you everything and be your advocate. Age Concern can also be fab, depending on your area. If you need any more help please post here again or email me eltrbrown at googlemail dot com

My late FIL had dementia and I found out enormous amounts of info which (I hope) massively helped DH, MIL and SIL when I couldn't help in person as was in Zambia with DS1 and newborn DS2.

Best of luck - you/they may get fobbed off by GP at first, depends on the individual doc I think, plus extra difficulty if don't admit problem (FIL always refused to accept there was anything wrong with him, and it made things so much worse for everyone )

Thinking of you xx

Thanks very much ZM, that's really helpful. I am sorry to hear about your FIL. It is tough doing things from a distance, we have moved back to the UK recently partly because of this.

MIL is in denial at how serious it is at the moment as she has a very active life and doesn't want to give it up/cut back, which I guess is what she is realistically going to have to do at some point. I just want to be armed with info so I can support FIL, MIL and DP if and when they need it. FIL is aware there is a problem, but MIL never goes with him to the gP to discuss it.

MIL stayed with us last week and fIL rang up saying he had been up since 5a.m looking for MIL and was really worried...incidents like this are getting quite worrying. Thank you for your email too.

Hi hongkongzoe The Alzheimers Disease Society (ADS)are a good place to start. As is Age Concern (both have a website).

Would it be worth referring him to social services for a social care assessment? It may be that a local social worker could visit and explain the options. MIL may not want to have any help at present but it would be useful to have had some contact perhaps if it is needed later.

Also Carers support, there may be one in their area (they can sit with the person with dementia whilst the carer pops out and so forth). ADS sometimes offer this depending on where the person lives and how active the local branch is.

It maybe worth speaking with GP who can refer on to the community mental health team where your FIL may be given a CPN (community psychiatric nurse). This would be helpful is any medication would be appropriate (aricept for example, depending on the type of dementia idenitified). He would be seen by a psychiatrist.

As your MIL is not too keen for any help at the moment, I would not bombard her with lots of information. But if it is something like dementia she will need support as time goes on. From a practical point of view if she is providing lots of support to him he could possibly claim Attendance Allowance.

An appointment with a GP may also be a good idea as sometimes if a person has urine infection (for example) this can exacerbate the persons behaviour if they have dementia. Thus making them even more disorientated.

I hope this is of some help to you and your PIL. It is overwhelming all the information.

I've worked for the Alzheimer's Society in NZ, and have cared for dementia patients in the UK, but it was all many years ago so my information may be out of date.

Getting a diagnosis can often be the most difficult part, but once you have one, there are services available. Your FIL's family may qualify for respite care where FIL goes for short stays in a home to give the family a break.

It may be worth investigating getting an enduring power of attorney setup (I'm not sure if it's called the same thing in the UK). This gives your MIL, or suitable family member, the legal right to sign things on FIL's behalf. Get it done while he still can understand what is happening and can give his informed consent, it will save many, many legal nightmares later. The Alzheimers Society can give you help with this.

It is also worth mentioning that bowel disease can mimic dementia symptoms. If one of the old dears I worked with took a sudden turn for the worse, we would dose them with fybogel. One swift bowel movement later and they were back to their own delightful selves again.

hongkongzoe, if your FIL doesn't have any diagnosis, it may not necessarily be dementia.

the GP may diagnose mild cognitive impairment rather than dementia which isn't necessarily progressive. ie. not all go on to have full blown dementia.

some milder symptoms like memory loss can be managed easily with the use of diaries etc.

i can understand your MIL wanting to keep going with her activities. it shouldn't be a problem as long as arrangements are made to keep you FIL safe or to just have someone around to allay his fears.

Further to dingledangle's post re support for your MIL, my mum found the Crossroads organisation a great help when she had her mother living with her in her earlier days of dementia.

Thanks for all the help and advice, it's given me a good idea of where to start and what assistance is available out there.

my late aunt had demntia and it was very painfull watching her detiriate.(can spell)My aunt started to wander out of the house and go missing looking for her mum and dad who had passed away many years ago.She did live with her brother who was also in his late 70,s and she nearly sent him crazy getting violent swearing etc.The sad thing was in real life before she was ill she was the kindest person you could meet.Its a sad cruel illnes and your MIL will need all the support she can get.We managed to get respite EVEN THOUGH SHE EXCAPSED FROM THERE WHEN THE NURSES BACK WAS TURNED. we GOT her bathed once a week at the local bath centre that dealt in these matters..Your MIL will have to keep an eye on him i lost count of the times we walked the streets and got the police looking for her.Your MIL wont be in denial for long as its a cruel illness and i wanted it to go away when my aunt was ill but it didnt.GOOD LUCK.