How often do you see anyone from/at the Memory Clinic?

Lawson58

Registered User
Aug 1, 2014
1,983
Victoria, Australia
Our national health system works somewhat differently to UK but I still think where you live has a big impact on how things work out for you.

Our GP referred my husband to a geriatrician who arranged for him to attend the memory clinic for assessment and he sent him off for scans. Prior to his initial attendance at the memory clinic, we were visited by an occupational therapist at home.

At his visit to the memory clinic, he was evaluated by a neuropsychologist through intensive testing while I spent an hour alone with the occupational therapist expressing my concerns and discussing what sort of things were happening with my husband.

Since then, he has seen the geriatrician every six months and has been back to the memory clinic for a review about two years ago. My husband has stated that he will never do that again because he had found it too hard to do.

At the geriatrician's visits, he does the MMSE test with a psych. Nurse while I have a private chat with the geriatrician.

I have not had any emergencies with OH's AD but I know that if necessary I could contact the geriatrician.
I feel that the care we have had has been very good. I don't feel that we have been abandoned or forgotten and that I am very grateful.
 

Lawson58

Registered User
Aug 1, 2014
1,983
Victoria, Australia
Our national health system works somewhat differently to UK but I still think where you live has a big impact on how things work out for you.

Our GP referred my husband to a geriatrician who arranged for him to attend the memory clinic for assessment and he sent him off for scans. Prior to his initial attendance at the memory clinic, we were visited by an occupational therapist at home.

At his visit to the memory clinic, he was evaluated by a neuropsychologist through intensive testing while I spent an hour alone with the occupational therapist expressing my concerns and discussing what sort of things were happening with my husband.

Since then, he has seen the geriatrician every six months and has been back to the memory clinic for a review about two years ago. My husband has stated that he will never do that again because he had found it too hard to do.

At the geriatrician's visits, he does the MMSE test with a psych. Nurse while I have a private chat with the geriatrician.

I have not had any emergencies with OH's AD but I know that if necessary I could contact the geriatrician.
I feel that the care we have had has been very good. I don't feel that we have been abandoned or forgotten and that I am very grateful.
 

Countryboy

Registered User
Mar 17, 2005
1,431
Cornwall
This have changed 20 years ago you have to get tested every 6 months in order to get the medication in my case ARICEPT I think that’s change now.

Obviously age could be a major factor and there could be several visits until you have a confirmed diagnoses after that it again depending on your age how you intend proceed with your life if your still in employment and wish to continue at work the Clinic usually an Occupational Therapist will support you at meetings with employers ect and will continue to do this up until the time you decide to retire, I was diagnosed with dementia and continued working for a further 8 years until I was 65 and was supported by an Occupational Therapist they were brilliant I have been retired almost 12 years and the visits have stopped well what would they do now anyway "nothing"
 

Dimpsy

Registered User
Sep 2, 2019
1,020
Don't put yourself down @Countryboy, having a diagnosis of dementia does not and should not mean a life less valued. Hold your head high and show people the dignity in dementia.
 

Countryboy

Registered User
Mar 17, 2005
1,431
Cornwall
Don't put yourself down @Countryboy, having a diagnosis of dementia does not and should not mean a life less valued. Hold your head high and show people the dignity in dementia.
Hi Dimpsy thanks for concern ;), maybe I didn’t phrase my reply correctly but I can assure you I never put myself down :rolleyes: I fought bureaucrats tooth and nail for 20 years Dimpsy I definitely been a fighter to retain my rights probably been in more battles than Field Marshal Montgomery. I joined Talking Point in March 2005 during a DVLA conflict over driving.

Back to previous thread I’m certain if I contacted the Memory Clinic they would visit me but I don’t have any problems or issues so no point however I do keep in contact by email sometime on phone with an Occupational Therapist who supported for eight years when I had to fight to stay at work , keep my driving licence I casa sure it was a challenge there are a few Member here on TP who will remember my conflicts by the way back 15 years ago I also had support from T.P administrators and private email contact there wasn’t so much data protection :confused::(

That was the good old days :):):)
 

Dimpsy

Registered User
Sep 2, 2019
1,020
Hi Dimpsy thanks for concern ;), maybe I didn’t phrase my reply correctly but I can assure you I never put myself down :rolleyes: I fought bureaucrats tooth and nail for 20 years Dimpsy I definitely been a fighter to retain my rights probably been in more battles than Field Marshal Montgomery. I joined Talking Point in March 2005 during a DVLA conflict over driving.

Back to previous thread I’m certain if I contacted the Memory Clinic they would visit me but I don’t have any problems or issues so no point however I do keep in contact by email sometime on phone with an Occupational Therapist who supported for eight years when I had to fight to stay at work , keep my driving licence I casa sure it was a challenge there are a few Member here on TP who will remember my conflicts by the way back 15 years ago I also had support from T.P administrators and private email contact there wasn’t so much data protection :confused::(

That was the good old days :):):)
Oooh, I love a fighter! as you can see I'm a newbie to TP and it's lovely to make your acquaintance neighbour. Respect to everybody who was here from the beginning, it's your experience that is so valuable to us who are stood on the abyss of the great unknown.
xx
 

myss

Registered User
Jan 14, 2018
430
Thank you for the replies. They've been an interesting read of the differences and similarities. @Lawson58 - I'm well impressed with the service you receive in Austrailia
I’m in Barnsley, the service is assess and diagnosis only. If you want to see them after that it’s only in emergency, and if you do contact them they explain there’s nothing they can do, but you seem to be doing fine. You don’t feel you’re doing fine? Well get SS involved, or possibly GP, or both. In fact, just go away and stop bothering me, can’t you see I’m busy.
Now the bit in bold is more closer to what has happened with my Dad. Admittedly my Mum handled his care and they both attended the Memory Clinic for his test and diagnosis, and as much as she may have rebuffed any offer of assistance of care for him at the time, she wouldn't have knocked back the idea of quarterly or bi-yearly checks. It just wasn't offered.
Someone replied that I could just ask them if I want their services, that's exactly what I've had to do. I mentioned this in my opening post that the three times they've seen my dad was at my request. I must also admit getting them to come and see him wasn't as hard as post above but it wasn't easy either.

I'm behind you100% @Palerider, in fact, your comments have given me food for thought!
I replied to the thread 'Your experience with health and social care', with our honest opinion of the superb and speedy service mum/we had received from her initial diagnosis of Alzheimer's.
And then ...............nothing! We stepped into the void and were left in limbo; no suggestions of future appointments to check on progress, stabilisation - or the downward spiral. Since we attended the Memory Clinic follow on appointment (tick box) and completed the Memory Matters course (tick box) we haven't had any further contact.

It's our first time around the block with mum's dementia, we're complere newbie's; no-one else in the family has trod the same path as mum so we have nobody to turn to about everyday issues that crop up. What a Godsend finding TP has been, we have a problem, someone has been there and got the T-shirt, problem sorted and there are many other people in the same boat as us.

But going back to your comment @Palerider, yes, it's the medical backup that is missing.

One of our children has Multiple Sclerosis, every year she has a MRI scan to check for any new lesions, she sees her consultant to review meds, she also has an MS nurse who she can contact at any time.

Why aren't the same supports put in place for PWD?
If mum was routinely called for a scan to check AZ progress, talk to a clinician about any new symptoms, which might lead to a change to more appropriate medication, in turn, we would have a better idea of what mum/us face next.
Regular aftercare would give such positivity to PWD, knowing that any changes would be picked up and I'm sure would lead to a better quality of life.
Dementia affects a huge part of the population, but I suppose the nature of a condition that generally develops in later life is never going to be a disease that governments throw money at.
]I'll get off my soapbox now.
This is what I think too. I don't expect monthly check-ups/calls/etc but it just seems desolate that after diagnosis, you're just left until the inevitable happens. No review of medication, no record of decline, no check up on new symptoms, etc unless you ask (and keep reminding that you asked) for it. This is what my dad has received unless I open my big mouth. Or unless they do it like that because they know my dad has a family but still - as mentioned already - there's not a letter/appointment from them of their own accord in past 6-7 years. Neither from his GP who is based just over 5 mins walk from his home.
 

dasntn

Registered User
May 21, 2014
29
North Devon
My wife visited the Memory Clinic during diagnosis and they referred us to a hospital in London, who then completed the diagnosis, and said that they could keep doing the 6 monthly checks or we could do it with the local Memory Clinic. We opted for the hospital as they had greater expertise. I think we did 3 follow up visits at the hospital but then for family network and support reasons we moved to Devon.

We registered with the GP and I asked to be put in touch with the memory clinic - slightly confused face on the GP as I recall, but we did get a session with the community psychiatric nurse, and the Alzheimer's Society was there as well. The basic purpose of the meeting was to link us up to AS. After that, no further check ups (other than the annual one with the GP for general health) so feel very much left on our own. Would be nice to feel that at least someone was keeping an eye on the medication (type, dosage) - is it still correct? The GP tries but he's not an expert in the field.

I was drawn to search for this thread by a post I saw on Facebook today with a survey https://hull.onlinesurveys.ac.uk/languagesurvey about what wording and language sufferers and carers would like used around 'behavioural changes'. I filled it in (as I do) but then it dawned on me "Who are these people using language about the condition as it gets more difficult?" At lots of these changes come well after initial diagnosis and I certainly never see experts (or hear such phrases), and from the responses on here, seems like that is pretty much the norm.

Leads me to wonder if there is a large disconnect between what the NHS thinks it is doing for us and what is actually happening in reality.

PS - worth a look at the survey to see the phrases that apparently are used instead of "Challenging Behaviour":
- Respond in Reasonable Ways to Adverse Conditions and Circumstances (RRACC)
- Behavioural and Psychological Symptoms of Dementia (BPSD)
- Behavioural and Emotional Expressions of Need (BEEN)
struck me as 3 particularly non-user-friendly terms.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
137
Interesting . I have just gone online and completed the survey. Personally I don't much mind what terminology is used. What I want is for dementia to be treated as the degenerative disease it is, rather than pretending it's a behavioural, social care issue. We need proper hospitals and care facilities, focused on addressing the symptoms of the disease, perhaps even specialised hospice facilities. Dementia should be addressed in the same way as any other degenerative and ultimately terminal disease, instead of leaving us to stagger along as best we can with utterly inadequate support.
 

Wakky

Registered User
Jan 5, 2020
21
My wife visited the Memory Clinic during diagnosis and they referred us to a hospital in London, who then completed the diagnosis, and said that they could keep doing the 6 monthly checks or we could do it with the local Memory Clinic. We opted for the hospital as they had greater expertise. I think we did 3 follow up visits at the hospital but then for family network and support reasons we moved to Devon.

We registered with the GP and I asked to be put in touch with the memory clinic - slightly confused face on the GP as I recall, but we did get a session with the community psychiatric nurse, and the Alzheimer's Society was there as well. The basic purpose of the meeting was to link us up to AS. After that, no further check ups (other than the annual one with the GP for general health) so feel very much left on our own. Would be nice to feel that at least someone was keeping an eye on the medication (type, dosage) - is it still correct? The GP tries but he's not an expert in the field.

I was drawn to search for this thread by a post I saw on Facebook today with a survey https://hull.onlinesurveys.ac.uk/languagesurvey about what wording and language sufferers and carers would like used around 'behavioural changes'. I filled it in (as I do) but then it dawned on me "Who are these people using language about the condition as it gets more difficult?" At lots of these changes come well after initial diagnosis and I certainly never see experts (or hear such phrases), and from the responses on here, seems like that is pretty much the norm.

Leads me to wonder if there is a large disconnect between what the NHS thinks it is doing for us and what is actually happening in reality.

PS - worth a look at the survey to see the phrases that apparently are used instead of "Challenging Behaviour":
- Respond in Reasonable Ways to Adverse Conditions and Circumstances (RRACC)
- Behavioural and Psychological Symptoms of Dementia (BPSD)
- Behavioural and Emotional Expressions of Need (BEEN)
struck me as 3 particularly non-user-friendly terms.
Hi.
My husband was diagnosed by a "specialist practitioner" (registrar I think, not a consultant) in September 2019 at a Memory Clinic in the community setting - we were expecting to see a hospital consultant. She wrote to our GP for him to prescribe medication, which took 6 weeks!!! She also arranged an MRI scan, which he had in December - not been informed of results yet. Since diagnosis we have had 2 visits from the community nurse from the memory clinic to check he was ok on the medication, At the second visit, she discharged us. We are told he will see the GP once a year. Marvellous. I feel completely abandoned. I know they can't cure this, and the medication has not advanced over the years, but I feel we are left to get on with it and assumed to be very willing carers until the end, no matter how hard it will be.
I stumbled upon this forum by accident and feel that at least I can have a moan and it will be confidential.
 

dasntn

Registered User
May 21, 2014
29
North Devon
Interesting . I have just gone online and completed the survey. Personally I don't much mind what terminology is used. What I want is for dementia to be treated as the degenerative disease it is, rather than pretending it's a behavioural, social care issue. We need proper hospitals and care facilities, focused on addressing the symptoms of the disease, perhaps even specialised hospice facilities. Dementia should be addressed in the same way as any other degenerative and ultimately terminal disease, instead of leaving us to stagger along as best we can with utterly inadequate support.
I agree totally. The feeling of being abandoned by the health service is what I have about all this.