I don’t think carers get anything like enough support or understanding. Until you’ve been through it, you don’t know what it’s like, like so many things in life.
I had personal experience looking after my mother-in-law, who had dementia, and then I worked for several years for the Alzheimer’s Society. Originally, we were called outreach workers, later “dementia navigators”, and later still “dementia advisers”.
I founded my AdaptDementia company because I wanted to give practical help to people with dementia and their families. We offer support and advice and cognitive stimulation therapy (CST).
There is still no treatment that cures dementia. CST lifts people’s mood, makes them feel socially acceptable, and allows them to react with others in a safe, stress-free environment.
I was trained to deliver the service by a clinical psychologist when it was first developed. It’s a therapy for dementia recommended by NICE [National Institute for Health and Care Excellence], which involves social therapy, brain-stimulation exercises, and reality orientation, in a relaxed and fun way. Some health authorities offer a short course to people at diagnosis, but others don’t have the budget to do this.
I offer a continuous service of CST. Anybody in the NHS should be offered the service I offer, but, because of funding, they tend to be offered one 14-week series; but, if people enjoy it, they get the offer of a place when I start the next session. If we get too many people on the waiting list, I can take on more staff. They have to pay, but they’re entitled to the attendance allowance, which they can use in any way they want. I give carers some time off. People can pay £75 for a day centre and respite care; so, I suppose, my services come cheap at the price.
I also deliver training to care homes and care agencies. I’d say the biggest needs of carers are for support and respite. And, no, there’s never enough support for carers from government and social services.
Interestingly, I’ve experienced very little aggression from people with dementia. Some are bewildered, but a huge amount depends on how you respond to them. My clients usually show me a different face, because I’m not related to any of them. I’m not their carer. I’m not telling them what to do. It’s really difficult to be the carer of someone with dementia.
We all have problems with the people who are nearest and dearest, and they’re the people we give the hardest time to. People with dementia lose that ability to put themselves in your place. It’s really, really hard for carers.
Dodging Dementia is an update on my book The Essential Guide to Avoiding Dementia, which was published in 2013. We still don’t have a cause, but we know a lot more about the risk factors.
I’m really talking about the risk factors, what you can do to mitigate them. There’s a genetic component, but we can all work to minimise other risk factors. But human nature is human nature, and I’ve found that nine people out of ten don’t do anything. People who worry about themselves are motivated to do something, but once they are further along, it’s harder. And it’s a little bit like being told to lose weight: very few people actually make the lifestyle changes that they know would benefit their health.
The biggest factor is cutting down dramatically on sugar and processed food. The element that lots of people ignore is keeping your electro-magnetic exposure to a minimum. It’s very difficult — you can’t get away from it — and it’s controversial. But we know that it affects birds and bees — homing pigeons become confused when they’re near phone masts — it’s probably affecting us as well. I switch my WiFi off at night, and turn my mobile off at 9 p.m. It saves money as well.
If I was diagnosed with dementia, I would give power of attorney to someone I trust (I have already organised this), arrange practical matters with an eye to the future, ensure my relatives know my care wishes. Because of my work, I have given a lot of thought to the psychological adjustment I’d have to make.
An enormous amount depends on the family and carers who look after you. Most of the people I see in early-stage dementia are cognisant with what is happening to them, but they are unable, usually, to help themselves much, because of the disease.
I have a lot of clients, and some stay stable for a long time. You can’t always put your finger on why. It’s a most peculiar illness, to be honest. We still don’t know.
People who have dementia are still the same people as before. Personhood doesn’t change.
In general, not enough attention is paid to helping their spiritual health. Care homes often ignore this side of things. I’d like to see care homes welcome ministers and religious leaders into the home, invite them to hold services, and invite residents to attend. Even non-churchgoers often love a religious service, and many enjoy singing hymns.
I have seen a bed-bound client completely uplifted after a visit from her minister of religion. I have also experienced hospitals who delay calling a priest even after they were requested to do so. I frequently visit care homes, and always ask how they support the spiritual side for their residents, and usually get a vague answer. Of course, there are exceptions.
I come from a large family, and was born and brought up in Sussex. I now run AdaptDementia with the help of my elder son, and I live in Hampshire. We are pretty busy, but when I’m not working I love busying myself on my allotment.
I went into the army as a platoon officer, and then a staff captain, straight from school. I believed in serving my country, and I still do. They say: “Join the army and see the world.” I saw the whole of south-east England, and was stationed in bits of London a lot of the time. I didn’t see the world, though I’d have liked to. My husband went all over the world; so he never wanted to go on holiday anywhere.
My job was mostly personnel management, looking after the welfare of officers under my command, and then in staff HQ, which was more administrative.
I left when I got married: one did in those days. Being an army wife was completely different, except I knew all the army terms and how things worked. You’d find it very strange from scratch. Lots of people find it very difficult when they leave, because life is very regulated, and then you have to plan a lot of things for yourself.
Since I was born into a Christian family, God was always there.
I still have my faith, and believe strongly in prayer because of my experiences — too many to detail — of the power of prayer in my life.
Corruption and lack of integrity makes me angry.
I’m happiest when I feel a sense of peace. That’s usually in quiet places, and often during meditation. Guidance is what I pray for most. I believe we have to listen to God, not just pray in an endless thought-stream. It’s a bit like going to a counsellor and never listening to a thing they say. If you don’t listen to the guidance, how you are you going to know?
I actually like complete silence. It’s very rare. I have an annual pass for Gilbert White’s house, in Selborne, because I find a real sense of peace there. There aren’t enough places like that.
Maybe I’d choose to be locked in a church with C. S. Lewis, because he was a fellow writer. I am a fan of the Narnia books, but he wrote some riveting stuff for adults, too. Or perhaps Pope John Paul II. I just feel he was a very holy man.
Mary Jordan was talking to Terence Handley MacMath.
Dodging Dementia: Understanding MCI and other risk factors is published by Hammersmith Health Books at £17.99 (Church Times Bookshop £16.19); 978-1-78161-242-2.