Social care for AD sufferer who lives alone

[Animus]

Hello everyone

My father lives alone in London and has moderate stage AD.

He receives 2 x 30min care from social services, to help with meal preparation. He receives only this light support package as he is physically well.

However - I have requested additional care hours as he is incredibly confused, agitated and disorientated - and frightened. HOWEVER - I have been informed that additional care hours can only be provided for "tasks", e.g. meal prep, personal care etc. Mental distress and the need for reassurance/reorientation is not a reason to receive social care. I found this both surprising and interesting, and it made me think that we're not yet set up for this illness in the UK.

He does not have the funds to pay for additional care himself, and there are no local befriending services (I have checked).

Has anyone had a similar experiences, or does anyone have any advice?

Thank you for your comments.

Animus

 

[steffie60]

As your Dad is in London and there are no other support networks could Age Concern help in any way?
This is the best I could come up with perhaps someone else will have a better idea.

 

[artyfarty]

We are in South London and have access to the Crossroads organisation who provide a 'sitter' type service a couple of hours a week. I have a price list from Mind Dementia Service who list Social Care at home as a new service - might be worth investigating.

My mum is also physically quite sprightly but generally confused and bored when left on her own. She has just started at a day centre one day a week - it means that she is safe, secure and occupied during the day. Perhaps a day care centre might be worth considering?

 

[artyfarty]

Forgot to mention that as you say he has no funds - have you applied for attendance allowance for him. It's not a huge amount but it does help. Also the Crossroads service I mentioned is being funded by our local council (Croydon) - it's actually supposed to be respite care - and all carers in the borough are getting 60 hours a year for free. One last thing - it was suggested to me that we could try lunch clubs - not all day care but it is a couple of hours of social interaction. They are generally very cheap - a fiver or so but unfortunately round here very oversubscribed.

 

[Eternity]

Hi Animus,

I had the same with social services when I first contacted them. You are right, it feels like they just don't get the issues with AD.

Here are some thoughts (apologies if you've already done these)

Is your dad always okay at doing other things like bathing, getting dressed/undressed, making a hot drink, taking medication, having enough fluid intake? If he needs help with those (even if it is only sometimes or for part of the process), then maybe his allocated hours could be increased (play them at their game)

Does your dad have a mental health team (or his GP) who would be willing to support his cause

Have you contacted your dad's local alzheimer's society to see if they have a support worker who could perhaps give some advice too. (they helped me a lot with my fight with social services)

Is your dad claiming everything he is entitled to eg: attendance allowance, housing and council tax benefits, pension credit etc. Any extra income could be used to self fund extra hours of care (which we now do)

Does your dad go to a day centre or older person club - would that be something he would like/take up if offered by social services?

I wish you the best of luck, but you just have to keep on at them (regularly) and fight your dad's corner. Wish it didn't have to be that way.

Sure others will add their ideas too

 

[Animus]

As your Dad is in London and there are no other support networks could Age Concern help in any way?
This is the best I could come up with perhaps someone else will have a better idea.

Thanks for your response. He's already on a the long waiting list for Age UK befriending services.

 

[PeggySmith]

If your dad lives alone he should be getting 25% council tax reduction. If he's diagnosed with dementia and gets AA then he should get 100% reduction.

 

[Animus]

Forgot to mention that as you say he has no funds - have you applied for attendance allowance for him. It's not a huge amount but it does help. Also the Crossroads service I mentioned is being funded by our local council (Croydon) - it's actually supposed to be respite care - and all carers in the borough are getting 60 hours a year for free. One last thing - it was suggested to me that we could try lunch clubs - not all day care but it is a couple of hours of social interaction. They are generally very cheap - a fiver or so but unfortunately round here very oversubscribed.

Hello - thanks for your ideas.

He's too young for Attendance Allowance, and we have a Personal Independence Claim in progress, which I've been told will take about 3 months to process. If this is approved, it will help pay for some care.

The social worker did not know of any council provided respite services, but I will try (again) to contact Crossroads. I know they have a long waiting list too.

Unfortunately Dad refuses lunch clubs and day centres as he feels too young and does not want to mix with lots of unfamiliar people. I'll keep trying though!

Thanks,

Animus

 

[Animus]

If your dad lives alone he should be getting 25% council tax reduction. If he's diagnosed with dementia and gets AA then he should get 100% reduction.

Hi PeggySmith - we already have the council tax exemption, but thank you.

 

[ems80]

Hi animus

I'm in the exact same situation at the moment with my mother who was recently diagnosed with frontal dementia. She to can look after herself in terms of eating and bathing etc, but it's the boredom and the lack of adventure to try new things which is the difficulty at the moment. Unsure if this is caused by her meds or just another facet of the disease. Anyway I've tried all manner of hobbies to keep her occupied but they either fizzle out or a straight no thanks. I've asked about the befriending service but she's not a very social person, as in she wouldn't go out to see friend/family unless I took her or another family member would. She always loves people visiting her tho, it was the same with my grandmother, an there is always an endless supply of biscuits. She didn't seem to pleased about the daycare/coffee morning suggestion at the local Alzheimer's society branch, so I am in the same boat as you and wondering what I can do to keep her occupied. By the way social services said my mother doesn't need any help yet, but I'm sure it won't be long.
Sorry I don't have any suggestions but just wanted you to know you're not alone and there are a lots of us on here.