Apprehensive about memory assessment - and the possible conversation afterwards

[tobyj]

After months and months of waiting, my DM has finally got a memory clinic appointment next week after a GP referral. This is something I wanted to happen (because she's very anxious about her failing memory, and I know there could be non-dementia causes, and if it is dementia then I know that meds might help a bit). But now the appointment's finally here, I'm really anxious about it on her behalf (as is she). She's worried because she doesn't know what to expect, and she's terrified they'll tell her she's got dementia (and that they'll stick her in a home). I'm worried because it will be stressful for her, but also I'm worried about how to handle the outcome. Does anyone have any words of wisdom on this? I've not much idea myself about what will happen at the appointment, and how long it will take, and how soon she might get a 'result'.

And if they do tell her she's got dementia (and I think that's very possible, or at least Mild Cognitive Impairment), I'm struggling to imagine how the conversation goes after that. What can we possibly say to make her feel any better? We can try to reassure her that we love her and we're there for her, but tbh I just don't know what else I'd say. She knows as well as I do that that diagnosis would basically mean that her situation is going to get worse and worse, potentially over many years, and that she is quite likely to end up in a care home eventually (which is something she dreads). I guess there would be practical conversations to be had in the longer term, but I just can't imagine that first conversation - what else can you say except sorry? If anyone has any words of advice on any of this, they would be very welcome. Of course, she may get a 'good' result from the assessment, but I want to try to be prepared for what happens if she doesn't.

From my mums experience, her first appointment at the memory clinic did not result in a diagnosis, she was asked lots of questions and underwent a Memory Test with a nurse. Then she was referred for two different scans and blood tests to rule out medical reasons for her memory problems. All the results were then read by a consultant who was the person who told us the outcome. The whole process took several months.

As far as what to say to your mum, we did not really say anything at that time. The consultant told her it would be a very slow deterioration so nothing to worry about initially. He then referred us to a support worker who gave us loads of leaflets and signposted us to clubs and helplines but agreed with us that mum did not need that level of support right now. We also had a Memory Nurse who oversaw the prescription of medication, they start on a very low dose and increase slowly every month or so over about four months. Then that was it, her GP took over the prescriptions and we were left to get on with things!

My mum lived independently for over five years with our gradual support with money matters, using technology and so on. There are so many aids and Apps available now to help - hive heating, Ring door bells and cameras, phone call blockers, Alexa etc. If Power of Attorney is not in place then I suggest you make that a priority. Mum did need care at home after five years or so as she forgot how to cook and when to eat but only went into a care home at the start of the first Covid lockdown when her dementia rapidly increased due to concussion following a fall in her bedroom. By that time, luckily she had no idea where she was so did not get upset about not living at home.

The assessment helps to unlock support and knowledge.
There are medications that can help and in the event of failing memory there are - as previously poster says, lots of aids for independent and safe living. Keeping people at home is the goal, not shipping them off to homes.
It's a scary prospect though, so I can understand your anxiety.

As already said, this is the first appointment after which there will be a referral for a scan and then some time after that there will be a diagnosis. There's plenty of time yet before you need to be worrying about that conversation. Before then either one of you might be dead - there's a cheery thought for the morning. Really though, there are many possible futures and none of us know what's coming. Nothing will change from having a diagnosis except the possibility of treatment, your mum will still be the same person.

I believe the sum of our conversation on the day was "ah well, now we know" and a week later Mum had no recollection of the scan, the diagnosis or any of it. She'd been living happily for a considerable time with little recollection of the day before and doing it so well that no-one noticed. For her none of it had happened and her life went on as before. She spent her last seven months in residential care after a fall and a broken arm, during that time she told me that she was the happiest she'd been for a long time because she had nothing at all to be worried about. Before she moved to residential care she no longer recognised her home of sixty years, thought she was living in a home and would call me to complain that the staff had gone somewhere and left her on her own. The move wasn't what I would have imagined five years previously, I couldn't have imagined that the day would come when mum would not recognise her own home.

Now is the time to be reviewing the will and setting up power of attorney if not already in place. Nobody gets "stuck in a home" because that costs more than being supported at home, providing the person isn't a danger to themselves or others then their home is where its at.

Mine was triggered by GP ordered scan. First memory clinic appt, the short test, scored 100%, still went on to the longer tests because of scan. 2/3 hour long sessions of games, then a final appt for the results.

no-one will be in a rush to put her in a home, much cheaper not to. And while she can make decisions, she has the say.

Thanks everyone, that's really helpful. I hadn't really thought that there might still be a lot of'process' to go. She's already had a mini memory test at the GP, which prompted the referral (she didn't do too badly I don't think, but there were some key gaps like not being able to name one of the everyday objects or remember the phrase they'd told her to remember). I guess blood tests and a scan could take quite a while though, so maybe a long road yet.

We've told her that she's nowhere near needing a home (she lives with my dad who's very capable), though I think if he weren't around she'd find it difficult to live unsupported, even though she's only just past mid 70s. It's become obvious in the last few months just how much dad masks her difficulties and also soothes her anxieties - when he was due to go away for a couple of days recently (which he used to do regularly) it became clear that she was too anxious to be left alone. She'd be OK in some sort of sheltered/retirement home though I think, if needed. But she has a tendency to obsess and catastrophise about all sorts of things, so I think 'being put in a home' is the latest thing on that list. We've got POA and dad's got all the paperwork in order, which is good.

In terms of aids, does anyone have recommendations of 'low tech' things that are helpful? She absolutely will not have any form of mobile, ipad, Alexa etc on principle, which will make things difficult if she ever does end up living without dad.

Re technology, we initially put a Truecall blocker on her phone line as mum was getting some scamming phone calls - she lived alone so always answered the phone. I used my load ( at my house) to add all the numbers we wanted to be able to call her, this included doctor, dentist as well as family and friends. Any other number got to listen to a message I recorded telling them to phone me if they wanted to speak to mum, using my mobile number so I could see who was calling. Mum had no idea this was installed! But she had previously given her bank details and cvc number to scammers who were selling insurance policies and charity subscriptions.

Then we installed Hive to be able to reset the heating controls after she fiddled with the thermostat and boiler settings. It seems to be a common thing for people with dementia to turn controls or switch sockets off. Not high tech, but we found covers that go around plugs in sockets helpful to stop mum from switching the fridge freezer off!

Ring cameras came next as we realised that a few people were coming to mums door to ask for money and sometimes she let them into the house! So we changed the door bell to a Ring one and set up alerts on my siblings and my phone so one of us was usually able to speak to whoever was calling before mum got to the door. I was very rude at times to some caller like a guy who called every couple of weeks to say he wanted paying for cleaning the gutters! We also installed Ring security cameras on the front and back of the house with light sensors and audio capacity - another means of talking to people outside the house.

With your dad being around, it’s unlikely you will need these gadgets initially but some might be helpful if your dad begins to find it more difficult to look after your mum all the time. I also scratched off the cvc number from the back of mums debit card so she could not use it on the phone, she could still use the cash machine which she did for several years before the card got “lost” when she kept forgetting to take it out of the machine!

My mum was 77 when first diagnosed but only began to need support from us after four or five years. The support needed grew gradually from just daily visits or phone calls to daily visits to prepare meals to carers calling at weekends, partly to give us a break but also to help mum shower and keep her company for a couple of hours. ( like many people with dementia, she began to refuse to shower and would not let us help her). It was not until she was 87 that it became unsafe for her to live alone so we found her a lovely care home. Covid restrictions were challenging for us but mum seemed happy enough and she lived there for two years until last year when she was 89 when she died.

Hopefully with your support and your dads company, your mum will have many more years at home before a care home might be necessary. Had my dad still been alive, I don’t think mum would have gone in a home, it was only the final six weeks that she needed medical input.

The biggest thing I would recommend is information. If you are informed about whatever the diagnosis is and what support is available you will feel more in control.

You can contact the national admiral nurse helpline (dementia uk 0800 888 6678) and ask whatever questions you want. Or the Alzheimers society (dementia connect) - don't have to have Alzheimers. They have good forums too and a web shop that sells a few bits and pieces of helpful things.

Low tech things you might think about - diary, calender, whiteboard (to write reminders / appointments on). If needed at some point you can use photos or pictures and stick them on doors or cupboards to remind people what goes where or which room is which. Good lighting, little plug in night lights in hallways to help navigate at night when people are often a bit more confused. Keeping rooms tidy and not too cluttered, trying not to have busy patterned carpets or wallpapers.

Dementia clocks can really help some people. They have the day, date, time and if its day or night on.

You can get simple remotes and phones if you need them (less buttons or pictures of family on phones).

There are loads of things that might help support people to stay at home and independent IF they need it.

Only 1/3rd of MCI becomes dementia so please try not to worry too much.

The nurse that did my mum’s memory assessment was lovely and helped mum feel she’d done really well. She/I weren’t given results immediately although the nurse discreetly indicated to me that there was some impairment, which obviously I was already aware of. Mum had already forgotten about this a few days later, then there was a wait of about eighteen months for a scan, then a further wait to see a psychiatrist (I didn’t use the word “psychiatrist “ to mum I just said a doctor for older people). Whenever she now partly realises how muddled and forgetful she is, I always say “we” and groan about how “we” are all getting older and how many things I forget now, and how “we” must write things down or well Forget. As time goes on, making each day a happy day for her becomes more and more important. I never challenge or contradict her. My aim is to help her feel everything is perfectly fine and that everything she does or says is quite normal. While quietly sorting things out when she’s temporarily distracted. I highly recommend a book “Contented Dementia” by Oliver James.

Thanks for all the practical tips - I will definitely be coming back to these, including some things I might be able to suggest to my dad. Things are getting a bit tricky between them I think - he's very patient, but also increasingly frustrated that she never wants to do anything any more, because she's increasingly apathetic and anxious, whiie he's very active and sociable and wants to be out and about.

@greenbeansnspinach that's a very positive story, though I can't believe your mum had to wait a year and a half for a scan. It really is shocking how long the waiting times are. Mum's already waited nearly 9 months for the memory clinic appointment, and she's definitely got significantly worse in that time - and all the time you read about these new drugs but how they only really have an effect if you take them early on, which is a bit useless if its going to take that long to start treatment. It's lovely to hear how you're trying to make your mum's life happy, and I'll have a look at the book you suggest. I've read a few things, and you hear such different accounts (on MN and elsewhere) - some are so positive, others so distressing. I read 'Keeper' recently, which I thought was very well written, but also desperately sad.

Our book group read “still Alice” recently but a couple of us chose to skip it because of our own experiences of caring we just didn’t want to read any more about it. Others did enjoy it though.
As others have said, and I also experienced with my granny, Mum’s mum, there can sometimes be a very painful period of denial and anger, followed by a sort of peaceful vagueness. Granny’s last years were occupied by watching the birds outside her window, carefully hiding some of her meals on wheels in case food supplies ran out, and telling us long stories about her childhood. Always the same stories but I was happy to go with the flow as she was happy living those times again. Everyone is different but both my mum and her mum were volatile, critical women who became much gentler and more contented as their cognitive abilities declined.
we are in an area where there is particularly poor access to some services, although our GPs are brilliant. Hopefully you shouldn’t have to wait too long!

I forgot to say also that I’m not selfless. If mum is happy, it’s good for me too as she doesn’t need to battle me or say hurtful things, which if I did try to “put her right” she still would I’m sure. And I am often tired and drained at the end of the day and sometimes come home and have a little swear, but I know a time may come if she predeceases me that there’ll be some comfort in knowing I tried my best.

@tobyj if you enjoy reading I'd really recommend Wendy Mitchell's books, Somebody I used to know and What I wish people knew about dementia.

Wendy lives with young onset dementia and wrote the books after her diagnosis. She does lots of really practical things to help herself continue to live independently and she is a really inspirational woman.

As you've all been so kind, I thought I'd come back with an update. DM had her memory assessment today, and from what I can gather it did not go terribly well. She said the doctor was very kind, so it wasn't too stressful at the time, but at the end he told her honestly but gently that she'd done quite badly. She said she thinks he said that she got an overall score of 9 out of 20 - that doesn't seem to correlate with anything I can find online (it sounded like an MMSE test, but I think theyre out of 30?), but he made clear it wasn't great. He said she'd hear back from them in a couple of weeks, but he brought up the possibility of dementia and Alzheimers, which I somehow feel he might not have done unless he was fairly confident that that would be the ultimate diagnosis?

She's very down this evening, but also rather in denial. Both she and my dad (which isn't terribly helpful) were saying that these are the kinds of tests she would never have been very good at anyway, and she's citing lots of other reasons why her memory's getting worse, and is saying she wishes she'd never gone for the test. I totally sympathise of course that she must be feeling very defensive right now, but I fear the road ahead will be sad and difficult.