Should I Expect More?

[jenniferjean]

When we were living in Wales my husband attended the memory clinic once a year after diagnosis. He usually was seen by a nurse who questioned him while I was seen in another room by another nurse. At the start of his journey he was seen by a consultant at the memory clinic, who originally diagnosed mild cognative impairment. He never saw the consultant again at the memory clinic, just the nurse.

When me moved to England last March, the doctor we registered with said that he was further along the road from MCI but she saw no reason to consult a memory clinic. She said that he had been prescribed 10mg donepezil and that we would carry on with that. She suggested that a memory clinic could do no more once medication prescribed. Some time after, when I had a form to fill in that required details of his dementia, I contacted her by phone and she clarified his dementia as being Alzheimers.

My question is this. Is she correct is saying no further need of a memory clinic? I often see on the forum people having reviews on their treatment etc., should I be pushing for this?

 

[Sirena]

It's true that once diagnosed the memory clinic don't really do anything. In the earlier stages my mother was had four visits to the memory clinic as her condition progressed from MCI to 'severe' over about 3 years. She saw a doctor 3 times, and the CPN once.

However, the CPN then visited her at home every six months. My mother was still living at home with several hours of care a day. I know that on the final visit the CPN asked "do you know who that is in the photograph" (her mother - she didn't). She also asked if she'd like to move to a care home (she said no - but a pretty pointless question, I doubt anyone ever says yes). So I guess she was assessing how far the dementia had progressed and ensuring she was still safe at home. However she inevitably didn't do a particularly good job of that, because she only saw my mother in the company of carers, when she was fine. She didn't see her wandering and anxious in the pouring rain because she was alone, or unable to find the bathroom in the flat where she'd lived for 40 years (I moved her to a care home a few months later).

Sorry for the ramble, but just to let you know what was available for my mother (in London). As you are at home with your husband, they may see CPN visits as less important. It also varies between areas so it may not be an option - but it would be worth asking if you think it would be useful.

 

[Grahamstown]

When we were living in Wales my husband attended the memory clinic once a year after diagnosis. He usually was seen by a nurse who questioned him while I was seen in another room by another nurse. At the start of his journey he was seen by a consultant at the memory clinic, who originally diagnosed mild cognative impairment. He never saw the consultant again at the memory clinic, just the nurse.

When me moved to England last March, the doctor we registered with said that he was further along the road from MCI but she saw no reason to consult a memory clinic. She said that he had been prescribed 10mg donepezil and that we would carry on with that. She suggested that a memory clinic could do no more once medication prescribed. Some time after, when I had a form to fill in that required details of his dementia, I contacted her by phone and she clarified his dementia as being Alzheimers.

My question is this. Is she correct is saying no further need of a memory clinic? I often see on the forum people having reviews on their treatment etc., should I be pushing for this?

I have had a similar experience in England and understand that to be the case, no need to have assessments just carry on. My husband and I had an excellent consultation with a young gp and agreed to reduce the donepezil and then stop it. This is not the usual routine but I feel it is right for him as he was deteriorating on 10 mgm. There has been very little change and we see the same gp next month to review the situation. More then because the use of donepezil is a difficult question.

 

[Beate]

I live in East London, and we were faithfully seen every six months by the Memory Clinic. In the beginning I found this helpful as not only did they do the MMSE every time so we could see the progression, but they also enquired about me and the help we got. They also wrote nice detailed reports that helped get him Attendance Allowance and a place at a Day Centre, because they wrote a recommendation into the report.

The further my OH got with his Alzheimer's, the less helpful I found them, as the appointments took him out of his Day Centre, he couldn't complete the MMSE anymore anyway, and I already had support in place. We kept going as I didn't want him to lose access to his Donepezil which they kept prescribing, but the last time I told them that I really struggled getting him here and it was an interruption of his day that was detrimental to him, also he could not speak anymore and thus contribute much to the appointment. Only then did they say they could see him at his Day Centre instead as it wasn't far away anyway! I wish they'd offered that a lot earlier.

In my opinion I think these appointments should be offered on a six months basis as long as they make sense for everyone involved. I don't think it's ok to just discharge someone into the wilderness.

 

[Louise7]

I think it's basically a postcode lottery based on funding. My Mum lives in NE London, not far from Beate but in a different borough. She was discharged from the memory clinic after just 2 visits - an initial visit then a follow up visit for the diagnosis & medication prescription. We then had no further contact with them until the GP sent a referral to the mental health team 4 years later.

 

[jugglingmum]

My brother got my mum diagnosed via his GP in Worcester, then my mum transferred to mine in Cheshire.

Initially she was seen 6 monthly, although they didn't do the MMSE after the first couple of visits. They said it wasn't really reflecting her level of dementia as she was overscoring.

A couple of years ago they told me that they were ending these visits as they didn't think they were of any value to the patient or the memory team, I saw someone different each time so no rapport built up and we were referred back to GP for donezipil. My mum does have to have an annual review with the GP, which checks for heart issues and covers the support issues. The impression I got was that GP would refer back if needed.

Personally the visits were a waste of time, and my annual leave, which at the time would have been best spent with my youngish children. Mum didn't know why she was there, she just knew I'd picked her up for an apt, she tried very hard on tests, but didn't enjoy them. I got no useful info from them at any stage. As happens with Alz, mum is only slowly losing skills, there is nothing needed at this stage beyond the donezipil, she has fantastic support in her sheltered extra care flat with care plan being very flexible and amended (via SW) when needed, and memory clinic had no input to this.

The GP has a lot of patients where my mum is so understands the support it provides as well.