Waiting times for diagnosis?

[WorriedDaughter83]

Hello. I'm new to this so hoping I'm not repeating what someone else has already asked (ironically). My questions is: has anyone else been struggling to get an answer on how long it will take to get a memory clinic assessment appointment? Or could tell me how long they've had to wait, so I can get an idea of how long we might have to wait?

For context: My family and I (sister and Dad) have been worried about my Mum's memory for a long time (years) but she's always been stubbornly insistent that 'nothing's wrong'. It's gotten much worse in the past year and we finally had a bit of a breakthrough early this year (Jan) when she agreed to let me and my sister go with her to GP appointments. Her GP agreed to refer her to the memory clinic in late Feb, despite saying that Mum 'passed' her mini memory test (which I was present for and had some concerns about how it was administered, but that's by-the-by).

Mum got a letter from the memory clinic in late March, saying she was on their list but that they were stopping assessments due to the pandemic. I totally get understand they had to do that. But it's now nearly August and we still haven't had any update on when Mum is likely to get an assessment. I know they've been doing video assessments since early June (I've been calling every couple of weeks since then to try and find out a rough ETA). But they're still not able to tell me how long it will be before Mum gets seen. Even if they told me it would be another two (or even six!) months, it would be hard, but I'd at least be able to start planning for how we'd cope until that point. It's the open-ended 'not knowing' bit I'm really struggling with, as is my Dad, who is with her all day, every day and is really struggling to cope.

Has anyone else had similar experiences? If so, how did you cope?!?

 

[Disney88]

Hi @WorriedDaughter83
It took 6 months in normal non-Covid times to get an appointment at the memory clinic for an assessment with my Mum earlier this year. I guess the wait could grow in the current climate. Mum’s Social Worker said that the service was in huge demand and a long wait was normal.
Could you speak to your GP in the meantime to see if there is any support or advice that they could offer you.
All the best, and I hope that you get the appointment soon.

 

[canary]

You dont have to wait for an official diagnosis to get help and support.
OH does not yet have a diagnosis, but he has had a needs assessment from Social Services and has been getting carers to help him wash/shower and dress, and if there wasnt the pandemic he would have been going to day care.

Your GP can contact SS, or you can contact them yourself.

Dont forget to organise POA (both financial and health & welfare) as this can be done at any time, but will save a lot of problems later. You can also apply for Attendance Allowance without a diagnosis.

 

[lemonbalm]

Hello @WorriedDaughter83 . It can certainly be a struggle dealing with dementia or the symptoms of dementia. I assume the GP ruled out any other possible causes for memory issues?

There is a wealth of experience on here so, if you can tell us a little about what you are struggling with, I'm sure you will receive lots of advice and support while you are waiting for the memory clinic assessment.

My mum was never assessed (She gets far too upset if anyone tries to test her in any way and would have refused to go in any case) and wasn't diagnosed until after a stroke which made the existing dementia much worse. She needs the level of care only a care home can provide now but I looked after her for two years or so before that, as she wouldn't accept outside help. I see @canary has advised you to ask for a Social Services Assessment, so hopefully you will be able to get some support for your Mum and Dad that way.

 

[WorriedDaughter83]

Hi @WorriedDaughter83
It took 6 months in normal non-Covid times to get an appointment at the memory clinic for an assessment with my Mum earlier this year. I guess the wait could grow in the current climate. Mum’s Social Worker said that the service was in huge demand and a long wait was normal.
Could you speak to your GP in the meantime to see if there is any support or advice that they could offer you.
All the best, and I hope that you get the appointment soon.

Thanks so much @Disney88 that's really helpful to know how long it took.

I live an hour an a half away from Mum and so don't have the same GP as her (and honestly I think the GP though I was overreacting and Mum didn't really have any memory issues), but helpfully Mum's new audiologist has just flagged concerns about her memory and cognitive functioning, and is now writing to both Mum's GP and the memory clinic to let them know, so I can potentially use this as a way to restart the conversation.

Thanks for your kind words, and I hope your Mum is doing OK

 

[WorriedDaughter83]

You dont have to wait for an official diagnosis to get help and support.
OH does not yet have a diagnosis, but he has had a needs assessment from Social Services and has been getting carers to help him wash/shower and dress, and if there wasnt the pandemic he would have been going to day care.

Your GP can contact SS, or you can contact them yourself.

Dont forget to organise POA (both financial and health & welfare) as this can be done at any time, but will save a lot of problems later. You can also apply for Attendance Allowance without a diagnosis.

Thanks so much @canary I didn't realise you didn't have to wait for an official diagnosis for things like that, I'll look into it.

She's OK with things like washing, showering, dressing right now. She struggles with cooking but my Dad's taken that over, and lockdown has actually been weirdly helpful in terms of removing a lot of stressful situations (e.g. her getting confused in busy train stations and shopping centres).

We've done the paperwork for POA and sent it to the OPG but now waiting for it to get processed - fingers crossed the forms are all OK because not sure I can go through that process again if they have to redo them ?

I hope your OH is OK and gets a diagnosis soon

 

[WorriedDaughter83]

Hello @WorriedDaughter83 . It can certainly be a struggle dealing with dementia or the symptoms of dementia. I assume the GP ruled out any other possible causes for memory issues?

There is a wealth of experience on here so, if you can tell us a little about what you are struggling with, I'm sure you will receive lots of advice and support while you are waiting for the memory clinic assessment.

My mum was never assessed (She gets far too upset if anyone tries to test her in any way and would have refused to go in any case) and wasn't diagnosed until after a stroke which made the existing dementia much worse. She needs the level of care only a care home can provide now but I looked after her for two years or so before that, as she wouldn't accept outside help. I see @canary has advised you to ask for a Social Services Assessment, so hopefully you will be able to get some support for your Mum and Dad that way.

Thanks @lemonbalm yes it's been tricky but it is for so many people, and its fab that places like this forum exist.

Yep, the GP has run her bloods a couple of times and nothing else has shown up. Mum suffers from anxiety but has been on meds for that for a while and it hasn't improved her memory or cognitive issues.

I'm really sorry to hear your Mum never got her assessment, I hope she is getting the support she needs now.

 

[lemonbalm]

Sounds as though you are doing all the right things @WorriedDaughter83 . Mum and I managed pretty for those two years, while she was still in her own flat and her dementia wasn't so bad. It's amazing how you can adapt to these things! Keep us posted on how everything goes.

 

[canary]

She's OK with things like washing, showering, dressing right now. She struggles with cooking but my Dad's taken that over, and lockdown has actually been weirdly helpful in terms of removing a lot of stressful situations

What sort of things is your dad struggling to cope with?
What would make life easier?
Sometimes, knowing the answers to these questions can make it easier to get help.

 

[WorriedDaughter83]

What sort of things is your dad struggling to cope with?
What would make life easier?
Sometimes, knowing the answers to these questions can make it easier to get help.

It's largely his mental health I was talking about - he's never been the most patient person, but Mum's constant repetition of the same question or same conversation over and over makes him very frustrated. Mum also now sometimes accuses him of moving or hiding things from her, and gets cross with him for cooking - even though when she tries to cook it completely overwhelms her and she needs help or dinner is inedible. She also has terrible hearing - which doesn't help the repetition of conversations issue - compounded by the fact that she regularly forgets to charge her hearing aids, or turn them on, or loses them.

Before lockdown Mum could go and stay with my sister and her kids for a few days, or I could go and spend a night or two with Mum so Dad got a bit of a break to decompress. But with lockdown that's harder - I still go over every couple of weeks but it's only for the day (we're trying to keep to social distancing rules so no overnight stays). We could bubble up with them but my husband and I work full time and it would be difficult to

In terms of what would make life easier for him, that's a good question. In some ways, I'm not sure there's a huge amount that can change until the pandemic ends, because overnight visits until then probably aren't a great idea (they're both over 70 and quite overweight, so fairly high risk for covid, and neither my sister nor I can realistically move in with them). But I'll look into whether there's anything social services can do to help. I think a diagnosis might help him (and indeed all of us) so we at least know more about what exactly is going on and how we can help her better, but we may just need to accept that that's a long way off.

 

[canary]

You could get the ball rolling on day care by requesting a needs assessment from SS. Although most of the day care centres are still shut, It will take a while to get it sorted and by that stage they will probably be open again. Although without a specific diagnosis choice will be more limited, OHs SW has found a day care centre that will accept him and we are just waiting for it to open again.
The SW might also be able to find a sitting service to give your dad a break, although, again, most of these are closed now, but they are beginning to reopen.

Im also posting a link to Compassionate Communication which your dad might find helpful in knowing how to respond to your mum.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Bettywin]

Hello. I'm new to this so hoping I'm not repeating what someone else has already asked (ironically). My questions is: has anyone else been struggling to get an answer on how long it will take to get a memory clinic assessment appointment? Or could tell me how long they've had to wait, so I can get an idea of how long we might have to wait?

For context: My family and I (sister and Dad) have been worried about my Mum's memory for a long time (years) but she's always been stubbornly insistent that 'nothing's wrong'. It's gotten much worse in the past year and we finally had a bit of a breakthrough early this year (Jan) when she agreed to let me and my sister go with her to GP appointments. Her GP agreed to refer her to the memory clinic in late Feb, despite saying that Mum 'passed' her mini memory test (which I was present for and had some concerns about how it was administered, but that's by-the-by).

Mum got a letter from the memory clinic in late March, saying she was on their list but that they were stopping assessments due to the pandemic. I totally get understand they had to do that. But it's now nearly August and we still haven't had any update on when Mum is likely to get an assessment. I know they've been doing video assessments since early June (I've been calling every couple of weeks since then to try and find out a rough ETA). But they're still not able to tell me how long it will be before Mum gets seen. Even if they told me it would be another two (or even six!) months, it would be hard, but I'd at least be able to start planning for how we'd cope until that point. It's the open-ended 'not knowing' bit I'm really struggling with, as is my Dad, who is with her all day, every day and is really struggling to cope.

Has anyone else had similar experiences? If so, how did you cope?!?

Hi I am a new member and been waiting since April to see a specialist and heard no more since then. I am worried and want to know details so I know what I am dealing with. I know there’s a delay but this is ridiculous. Mum had her scan in February this year and I know it’s worst than the last one. I am really scared of this whole situation. I hope your doctors let you know soon. It’s a waiting game. Not sure how long it will go on and in the meantime mum is slowly getting worse.

 

[canary]

Hello @Bettywin and welcome to DTP.
This pandemic seems to have put the kibosh on everything. Hospitals are beginning to restart routine appointments now, but there is unfortunately a delay in everything.

 

[WorriedDaughter83]

Hi I am a new member and been waiting since April to see a specialist and heard no more since then. I am worried and want to know details so I know what I am dealing with. I know there’s a delay but this is ridiculous. Mum had her scan in February this year and I know it’s worst than the last one. I am really scared of this whole situation. I hope your doctors let you know soon. It’s a waiting game. Not sure how long it will go on and in the meantime mum is slowly getting worse.

Hey @Bettywin I'm really sorry to hear things have been taking so long for you and your Mum. Not that it's helped me much, but have you tried calling the GP/specialist/memory clinic? I call every other couple of weeks to get an update - hasn't given me a huge amount of info, but it keeps you visible and also makes me feel like I'm doing something productive.

 

[Rosettastone57]

My mother in law was diagnosed in 2015 and it took over 8 months then to sort out. She was referred to the memory clinic at the end of 2014, had a memory test in March 2015, CT scan in May 2015 and had a diagnosis in July the same year. No magic answers I'm afraid.

 

[Bettywin]

Hey @Bettywin I'm really sorry to hear things have been taking so long for you and your Mum. Not that it's helped me much, but have you tried calling the GP/specialist/memory clinic? I call every other couple of weeks to get an update - hasn't given me a huge amount of info, but it keeps you visible and also makes me feel like I'm doing something productive.

Thank you for reply I will start chasing these people

 

[Judvark]

Hi all,

I'm a new member and I've been reading through the original post and all the responses, and it's amazing just how many people are in the same boat. It's weirdly comforting to know so many people are going through similar situations, though obviously upsetting that so many of our family members are being affected.

We're on a similar journey, and so this thread has been really helpful.

My dad has had memory problems for years but has been unwilling to confront it, much to our frustrations. The lockdown has exacerbated his problem. Mum and dad's little routines have gone or been reduced, and then my dad's brother died, also of dementia, during the lockdown too. This appears to have taken him to a new level. What was simply a bad memory problem has turned into confusion, huge anxiety and more. It's hard for my mum, but after dad experienced an episode that involved him going missing, we've been able to start the ball rolling with the GP. He's taking some medication now for his anxiety, but we're still awaiting news from the memory clinic after having been referred a few weeks ago.

It's good to get an idea of a timeline, though I will call them tomorrow to see if we can do anything in the meantime. I'm quite keen to see what help there is to assist my mum as well as my dad. I live a short walk away so we meet up for a week each day, but I know the evenings are hard work for my mum.

I'll be keeping an eye on this thread, but it's been great for small titbits of advice, so thanks to everyone who has posted. Thanks @WorriedDaughter83 for the original post and good luck. And good luck to everyone going through this.

 

[Rosie Apple]

My OH suffered from anxiety for about 5 or 6 years.By January it seemed to get much worse. His G.P referred him to the memory assessment service after a quick test. In February, he had a home visit and another more detailed test . This was to be followed by an appointment for an assessment by a specialist memory nurse in March, but it was cancelled because of the lockdown. I chased it up by ringing them several times and mid-June we were offered an assessment by video, and although I wasn't very confident using this method, I accepted it straight away rather than wait for who knows how long? It all worked well and as OH had had a MRI for an unrelated reason in December, they said they would be able to use this. I had a phone call 3 weeks later to ask if we would prefer a phonecall or another video appointment with the consultant. And on July 29th we received the Vascular Dementia diagnosis. After reading of the experience of others I realise that we were really fortunate to get it done and dusted in a relatively short time. I really wish I had found this wonderfully informative and supportive site sooner, Especially as we, too, were under the impression that we were unable to access much help or support until a definite diagnosis had happened and that, evidently is not the case.
As you can see this is all quite recent for us,and still rather raw. I would also be interested to know how many people originally treated for anxiety and depression go on to be diagnosed with dementia.

 

[Cat27]

Hi all,

I'm a new member and I've been reading through the original post and all the responses, and it's amazing just how many people are in the same boat. It's weirdly comforting to know so many people are going through similar situations, though obviously upsetting that so many of our family members are being affected.

We're on a similar journey, and so this thread has been really helpful.

My dad has had memory problems for years but has been unwilling to confront it, much to our frustrations. The lockdown has exacerbated his problem. Mum and dad's little routines have gone or been reduced, and then my dad's brother died, also of dementia, during the lockdown too. This appears to have taken him to a new level. What was simply a bad memory problem has turned into confusion, huge anxiety and more. It's hard for my mum, but after dad experienced an episode that involved him going missing, we've been able to start the ball rolling with the GP. He's taking some medication now for his anxiety, but we're still awaiting news from the memory clinic after having been referred a few weeks ago.

It's good to get an idea of a timeline, though I will call them tomorrow to see if we can do anything in the meantime. I'm quite keen to see what help there is to assist my mum as well as my dad. I live a short walk away so we meet up for a week each day, but I know the evenings are hard work for my mum.

I'll be keeping an eye on this thread, but it's been great for small titbits of advice, so thanks to everyone who has posted. Thanks @WorriedDaughter83 for the original post and good luck. And good luck to everyone going through this.

Welcome to DTP @Judvark
I’m glad you’re finding us helpful. Please keep posting as you’ll get lots of support here.

 

[WorriedDaughter83]

Hi everyone. Thanks so much for your kind and supportive messages. Just wanted to update you.

Mum got a phonecall early last week asking if she was free for a video assessment and since then everything's happened really quickly.

The assessment was in 3 separate parts: a chat on the phone with me; a video call for Mum where she was asked to do some tasks on paper and pen, and then another video chat with a specialist a few days later with both me and Mum together where they asked Mum some more questions, talked us through everything including how she did on the assessment, the referral from the GP and gave her a diagnosis. Mum has Alzheimer's.

It's awful and Mum was devastated but hopefully this is a positive step as it means we can support Mum better now we know what is going on. She is going to get some medication that hopefully will help to stop things getting worse for a time and might even improve her memory for a bit.

What may have helped (and I don't have definitive proof, only circumstantial) but I asked Mum's audiologist to write a letter to the GP and memory clinic after the audiologist noticed Mum's memory issues and asked me to attend her hearing appointment with her. The phone call about the assessment came through less than a week after the letter was sent and they did mention that they had taken the information in to into account when making the diagnosis.