Alzheimer's care after initial diagnosis

[Hmmph]

Went to the GP with suspicions of Alzheimer's and were referred to the Memory Clinic who did tests and diagnosed Alzheimer's. Would now appear to have been discharged from the care of the Memory Clinic.

Who in the NHS is then responsible for longer term healthcare - assessing the progression of the disease and prescribing and monitoring medication for it. Is it back to the GP or should we have been referred elsewhere or should we still be under the Memory Clinic?

In our experience the memory clinic prescribed medication and when it was built up to correct level they discharged. I find it shocking that with such an extreme diagnosis you end up with some leaflets and that’s that! However for my parent with early Alzheimer’s the medication has made a significant difference to her paranoia, anxiety and lability to sleep so if no medication is prescribed I’d question this.

I think some GPS do an annual “Dementia review”. I’ve found the Alzheimer’s society helpful for advice and they can signpost to support groups. But yes, post diagnosis there isn’t the support I’d expect.

We had similar, my parent was diagnosed and then discharged. Basically we were left completely unsupported, no onward referral and no help from anyone. Eighteen months later a crisis occurred, parent hospitalised, then discharged and back to square one, rinse and repeat.

Typically specialists discharge back to the GP with advice on medication etc.

I'd make a GP appointment and ask what the options are.

Thanks all. No medication was initially prescribed, but things have deteriorated a lot since then.

I am shocked there isn't ongoing reviews by a specialist! I guess back to the GP and hope that they can help...

Yup it’s a scandal. A progressive terminal illness that mainly affects people whose partners are elderly themselves and you’re just discharged to manage for yourself. Appalling.

go back to the gp - see if their practice has someone who specialises in dementia, or if your area has a geriatric or frailty hub.

unfortunately there is very little that medication can do for dementia progression, and what does work tends to work when used early to slow down progress.

gps should provide an annual review to dementia patients - target is 75% of those on their list with dementia. I’ve seen very little evidence of this happening.

you should have access to a Dementia Navigator (or similar job title). They can be very helpful.

This was similar to how it was when my mum was diagnosed in 2009, she had medication prescribed by the consultant at the memory clinic and that was it. It was only when my mum accidentally took too many pills and ended up in hospital that we got social services intervention and we got a care plan. I've had to fight all the way to get anything for my mum. The people who helped me most we our local age concern who put me in touch with carers and day centres. I got a lot of advice and support through the Alzheimer's society website forum

My mum hasn't had any further appointments at the memory clinic after her diagnosis

Some of the gps my mum has had have been very good and proactive others have been awful - neglectful and ill informed and have prescribed medications my mum doesn't need like paracetamol and antidepressants monthly to a vulnerable confused lady

My mum gets a yearly care plan review- in theory, often it's late and it's rarely the same social worker two years running so you have to go through everything again for their benefit.

I've had to learn a lot about the illness and research what's available and fight to get it for my mum

Hope you get some help and support

Post diagnosis my DM had six home visits from an occupational health lady who was brilliant, however as much of it was focused on maintaining her independence the advice had a short shelf life. Then discharged back to GP to do an annual review, which feels like putting a sticky plaster on a lost limb. It’s ridiculous. It’s a progressive 100% fatal illness and it’s left to families who are harassed and baffled. I was called by a dementia navigator who basically shouted at me for not being able to sort out my extremely paranoid DMs Power of Attorney. Never forget that.