Supporting a loved one with dementia
What happens when your parent gets dementia?
And how is best to support them?
My mother was diagnosed with Alzheimer’s Disease in March 2022. We’d started noticing changes in her cognition after the first 2020 lockdown, but the diagnosis helped us realise cognitive decline had probably been going on for years.
I don’t have all the answers, but as a menopause coach supporting women in this midlife rollercoaster I know I’m not the only one squished by the sandwich years - caring for ageing parents and dependent children.
I’ve been asked lots of questions, even though I’m learning as I go, so I thought I’d share some of the things I’ve learned and have helped me. Bear in mind that this is for a UK audience - and that I’m in the South West of England - as it seems there are huge differences regionally and internationally in terms of diagnosis and support offered.
So here’s a brief overview.
Diagnosis and NHS support
I had conversations with 3 different doctors in 3 different NHS practices before getting Mum a referral to a Memory Service for a dementia assessment. It took about 18 months to get the diagnosis, but I know many for whom it takes longer. We had quite a few phone appointments - given COVID restrictions - and this was unhelpful. Mum did have a CT scan, which showed ‘brain shrinkage in line with ageing’. Not helpful at the time.
Once she was diagnosed that was pretty much it in terms of structured support. They suggested Mum take a drug called Donepezil (which MAY slow down progression of the disease, but it’s unclear for how long and how well it works or indeed what happens when you stop taking it…). They gave us the contact details for Alzheimer’s UK to appoint a support worker, had a 6 month and 12 month follow up appointment and off we went to work out what to do next.
In any further appointments I tend to email the GP in advance with a list of my concerns and the signs of Mum’s deterioration in order not to have to humiliate Mum by going through it all. It doesn’t always help. In general I have found female GPs far more helpful than male ones - but I’m aware that this is purely circumstatial. However, I will always request female GPs for myself, so I now do the same for my mother.
Mum’s anxiety and paranoia got pretty bad, so she now takes sertraline - and antidepressant that seems to work well with Alzheimer’s patients. We definitely notice if she doesn’t take it.
Taking medication is interesting for someone who can’t really work out time, or remember if she’s taken medication, and thinks she doesn’t need it. We were given a Pivotel timed dispenser which really helped as well as a Memrabel clock which is supposed to help.
Having Lasting Power of Attorney has been essential for managing Mum’s health and financial affairs and I’d suggest getting that sorted as soon as you start to notice any cognitive change (if you don’t already have one!). You can reassure your loved one that it doesn’t take anything away from them. It’s helped from the very beginning with selling Mum’s house, being able to be present at medical appointments etc etc.
Alzheimers UK -
Alzheimer’s UK is a UK charity which has some brilliantly helpful downloads and books that they will send you for free from their website (publications list is here). There are guides for those who have the dementia diagnosis, for carers, and for various different aspects of living with the disease. I’ve found them helpful and my Mum has read (and lost) it numerous times.
In my local area (North Somerset) we also get allocated a support worker who is employed by Alzheimer’s UK. She visited me, and came to see Mum too and we’ve had occasional conversation. Mainly it’s a signpost to other resources.
Admiral nurses and Dementia UK
The Admiral Nurses offer a virtual clinic, a helpline and, in some parts of the country an in person clinic. This is run by Dementia UK and is free. They can give advice on a wide range of dementia related issues and can be really helpful, especially if you don’t feel like you know where to turn. I’ve found them really helpful, compassionate and able to help you advocate for the person with Dementia even if you’re getting a different story from the GP.
Memory cafes and other meetings
My local memory cafe has been the most AMAZING resource. They have lots of well trained volunteers and lots of experience to share. I take my Mum every fortnight and she loves the activities they put on for her, and I’ve found the carers room an incredible resource and an inspiration. Through them I’ve found out about local carers, attendance allowance, how to connect to social workers, and access to carers support for me too.
Memory cafe’s vary, and the timing can be awkward because they so often overlap with school pick up times. It’s a lot easier now that my kids get the bus to school as I’d have to drive around in circles for an hour to get kids, drop them off, pick Mum up etc.
Age UK are also a great resource and often have meetings too.
Alzheimer’s UK also run tea dances and ‘singing for the brain’, and there are art clubs and bowling and all sorts.
But many of these happen in the middle of the day, overlap with school runs and generally can be hard to access if you’re supporting someone with dementia and trying to work and run a family home too.
So, I tried a few and decided to stick with the Memory Cafe - it gave both me and Mum support - and was just one afternoon a fortnight. There are day centres around too - weekly or even daily all-day support, but the timing and location were too much to manage for me.
Attendance allowance and other financial support
Attendance allowance isn’t means tested and all people who are need of extra support - those with dementia - should be able to apply for it. The link for more information and the form is here. I’ve also found out that Mum is able to apply for a Council Tax reduction too. There are other benefits available for carers, and for other aspects of care depending on your loved one’s financial position, Age UK and the local council have advisors who can help - I found most things out via the Memory Cafe carers room.
Social care support
It was a long wait to get Mum a care assessment. I actually waited less time to have a carers assessment - the social worker who did this was so compassionate and kind, and helped me work out my boundaries in caring for Mum. I was also able to apply for some funding for my own support - a one off payment that could be for leisure, or other activities that support your wellbeing as a carer.
Mum isn’t eligible for any funded support from social care because she has savings over the specified amount. As a result there’s very little that they can do. It’s just a dead end. If she didn’t have funding they would step in a little more. But I know they are stretched to the absolute max. There’s a local helpline I can call if mum is in crisis or has an emergency and they could step into plug gaps. And they also filled in an spreadsheet with a request to care agencies - but it took a while to get any agency support in place.
Carers and other support
I was lucky to find a couple of self employed carers through one of the other people at the memory cafe carers group. They would take Mum out and about, to cafes, or help her with shopping and other errands. It worked well for a while, but as my mother declined I think she didn’t like being seen with carers as it was like an admission of her disease. I’ve had agency carers as well - they come for short visits in the morning and evening, as a welfare check, and to prompt Mum to eat, and take her medication. They often do her dishes and have a quick tidy up. She is more accepting of these at the moment, but doesn’t always let them in! She also has a cleaner who comes twice a week, who has been amazing. She’ll chat to mum, check she’s had breakfast, do her laundry and empty bins, and sometimes pop out to get her milk and tea. She had a similar experience with her own mother and has lots of elderly clients so she’s fairly unique in her ability to understand and support Mum. She also goes in once a month when I’ve taken Mum out for a few hours so she can do a proper clean and tidy up - because the chaos of Mum’s living room and bedroom can be amazing - and such a contrast to how Mum used to be.
Reading materials and blogs
I’ve read a lot of books about dementia in the last couple of years. Including the Alzheimers Society ones which are really helpful and practical. The most helpful have been the ones that help me get inside understanding my mother’s view of the world. I’d recommend the following:
Wendy Mitchell - Somebody I used to know and What I Wish People Knew about Dementia (Wendy was diagnosed with Alzheimers in her late 50s and has been sharing her experience as well as campaigning for better understanding of dementia via her blog Which Me am I Today?
Contented Dementia by Oliver James - I found this a harder read - some of it felt impossible to apply to my situation - but an understanding of meeting the person where they are, and being aware of their emotional responses and how they can pick up more on the emotion than anything else.
Travellers to Unimaginable Lands by Dasha Kiper - this is one of the most helpful in terms of understanding why it feels like I can act irrationally - because my brain simply cannot compute the ways in which my mother’s brain isn’t working (I’ve massively oversimplified), I heard this initially on BBC sounds and I think it’s still available here.
Natural Solutions to Alzheimers and Dementia by Marilyn Glenville - Marilyn Glenville has a nutrition forward approach to many of life health challenges, so there were some interesting things in here but very hard to apply to someone who can’t really cook for themselves and isn’t living with us.
The XX Brain - Lisa Mosconi - I read this because I’m fascinated by Women’s health and how our brains are different at different stages of life. I gained an initial understanding of dementia and dementia risk from this book - before my mother’s diagnosis.
What Dementia Teaches us About Love - Nicci Gerrard - I’m currently reading this, which is a different sort of insight, and helps me recognise that this caring job is a hard one, but not without rewards.
My local memory cafe in Nailsea also produced a great guide to dementia and ran a short course and discussion group which was really helpful!
Podcasts
I particularly enjoyed this episode documenting a podcaster’s exploration of his own father’s dementia journey from the Are you Mental podcast - a really compassionate and enlightening insight.
Alzheimers Society have a podcast but I haven’t dipped into it yet.
Supporting the carer
This feels like the most important thing, and sometimes the hardest. Because your job as a carer is never done and always evolving, and the rest of life isn’t on pause, you still have other responsibilities and people to support. And it’s SO easy to get lost in the middle of it all and put our own self care, and health and wellbeing to the bottom of the list.
However, the message I received LOUD and clear, before my mother even had her diagnosis, was that the carer’s long term health is at risk if they don’t mitigate the stress and burden of caring. It came across in my women’ health coaching studies, in books I read, from people I spoke to. I have a toolkit that has been absolutely vital to me. My toolkit includes:
Daily meditation (at least 5 x week)- this helps me be more mindful moment-to-moment and really helps my emotional regulation around Mum.
Time outside in nature - whether with a cup of tea, or for a walk, swim or gardening.
Wild Swimming - especially in winter, when you have to be completely present and aware of your body and your surroundings to stay safe - and the post swim HIGH is amazing. (I know this isn’t everyone’s cup of tea - but it helps me - a walk in the woods or a run would probably give a similar effect!).
Regular walks with friends who get it - they may have been through something similar, or are in a similar boat - it helps to download
Regular therapy sessions - when emotions are feeling hard to work through I have a therapist I can book a session with, which is hugely helpful.
A regular family chat with my siblings and step siblings - both my siblings live in different countries so aren’t around, and my step sisters live a few hours away - but I can share the burden and decision making with them.
Asking for help, and delegating. Both my husband and my mother in law have picked up the slack at home, and with the kids, as well as being shoulders to cry and rage on!
Journalling - writing it out is something that really helps me to process what’s going on and think through solutions to impossible problems. I can also write out my rage!
Menstrual cycle tracking - this is an odd one to put in there - but by tracking my cycle I can be more in tune with my energy and emotional resilience. At the end of my cycle I find it much harder to deal with some of mum’s inconsistencies and she can push my buttons. Because here’s the thing - often the things that irritated you most about the person with dementia BEFORE they had it, will come to the fore and irritate you even more!! This is where the therapist comes in for me!