Mum's recent dementia diagnosis

[s1mon321]

Hi everyone. We're based in the UK and my mum has recently been diagnosed with dementia following a relatively short period of cognitive decline (18 months). She was referred to a memory clinic by her GP and they completed some question/answer tests with the outcome being that she has 'F001 Dementia in Alzheimer's Disease with late onset'. She has not had any other testing and there seems to be a reluctance by the GP to test for it (blood tests?). I knwo for a fact that mum wouldn't go for any type of scan.

Anyway, my question is......what next? I expected that the GP would ask to see her following diagnosis - nothing. I don't think the memory clinic are doing any more tests. We have had contact from a local Dementia Link Worker, but he seems to be focused on community links but sadly mum won't leave the house!

My sister and I live close to mum and can help out in any way we can, but we're not sure what to do next? Social care came before the memory clinic tests and assessed her needs so we will be planning some home/care assistance to do what we can't.

Any advice would be greatly appreciated!

Thanks

Simon

 

[canary]

Hello @s1mon321 and welcome to Talking Point.

Dementia is diagnosed from memory tests, symptoms (usually supplied by relatives) and a scan. The blood tests you mention dont actually test for dementia, they simply rule out any other condition. If your mum wont go for a scan there are no other tests, but you do have a diagnosis of general dementia.

There is almost no treatment for dementia. There are drugs which can improve some dementia symptoms, but some (like donepezil) only work for Alzheimers and the rest are only given if there specific problems like anxiety, aggression or psychosis and are prescribed if/when the problem shows. Do you think that your mum might be wanting to stay in because of anxiety and is she showing any other signs of anxiety? If so speak to her GP about the advisability of antianxiety medication. There is no treatment which can cure, or even slow down the dementia, so very few places do routine medical follow ups for dementia and Im afraid that you are left to contact the doctor on an "as needed" basis.

Everything else is looking at the social side and helping as ability is lost, There are things like Occupational Therapy assessments for things like grab rails, chair risers and other aids to help with getting around and some safty issues. Social Services can look at getting carers in to help with tasks like dressing, taking meds at the right time, meals, etc. They may also offer day care, respite and/or a sitting service. Charities may offer help with housework or a befriending service - it depends where you are as to what is available.

Its not very much, is it?
TBH, the most helpful advice I have received has been on this site.

 

[Pacucho]

Hello Simon,

Just read your post regarding your mum's diagnosis of AD. You asked what should happen next ?

As canary explained the potential treatments available are to deal with any symptoms that may arise from your mum's AD. Therefore, this should be something followed up your mum's GP in collaboration with the memory clinic, to see whether any such treatments are appropriate (incl. whether your mum would be able to take any, e.g. potential conflicts with any other medication she may already be on).

Also, hopefully you and your sister may be entitled to some form of support to learn more about how AD may be affecting your mum, but this is subject to a postcode lottery. You can see whether you have a local Alzheimer's Society's office or local Carers Centre, who can advise. This may also include what benefits and entitlements both your mum and you and your sister may be entitled to.

Finally, as canary explained there is social services to assess whether your mum needs support (if available).
Hope this helps,

Paco