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By the end of this year there will be 850,000 people in the UK living with dementia with 60,000 deaths a year attributable to this condition. With an ever-ageing population, the figure is set to grow over the next 12 years by a staggering 40%.

So if we then consider all the loved ones and others associated with caring for those with dementia it is easy to see that most of us either is or will be affected by this appalling condition, directly or indirectly, at some point in our lives. Which is why I felt I could get away with hooking you in by including “vets” in the title of this article although in reality I could have added any job title I fancied; truth is, dementia affects all of us.

Jeremy and I are currently emerging from a dark place as we’ve had the past two plus years of our lives slowly, insidiously taken over by caring for his mother.

My mother-in-law was struck down by Lewy Body dementia (LBD) with Parkinson’s; I use the term “struck down” as this particular condition, associated with protein deposits in the brain (so-called Lewy bodies), is characterised by extreme variability and catastrophic decline. And so it has been for my MIL: Six months ago she could walk a mile on the flat and have a half-sensible conversation; now she is bed-ridden and confused. It’s all very sad and actually quite shocking.


But this is not a sorry tale and we are not suffering from “poor-me-itis”. Far from it.

During the past two weeks she has been transferred to an excellent nursing home and we are appreciating more than ever the time suddenly available to us for family life and doing the things we haven’t been able to do recently. Challenging periods also provide an opportunity for us to learn and develop as individuals and I feel we’ve been given lessons that may be of value in sharing. So here are my 5 learnings about dementia and what to do if someone you know or love starts showing signs of cognitive deterioration; I hope my tips will be of help to someone reading this:

1. Get a clinical diagnosis (but have Power of Attorney in place first). Read what you can, talk to others and try to understand as much as you can about dementia, what lies ahead, how best to handle situations and find out what help is available. You may not need support now, but trust me, you will.

It’s actually quite hard finding out what is available but good places to start include The Alzheimer’s Society website, AgeUK, Social Services and your GP. We also found Contented Dementia a useful read even though we were unable to apply all the approaches suggested in the book.

2. Refrain from asking the dementia sufferer questions! When your usual frames of reference are muddled at best and non-existent at worst, being bombarded with questions causes confusion and distress. Simply don’t do it. Learn other ways to communicate.

3. Tune into moods and mental states and work with whatever is thrown at you. Do not challenge the world of the dementia sufferer as to them their experiences are very real so resist urges to correct them and “put them right”. This is a hard thing to do at first, but it is necessary if you wish to minimise their stress and yours.

Instead enter their world, as when joining in you can both help sustain a happy state and also lead them out of negative ones. I recall the day we walked in on my MIL and she was stood up, fists clenched, shaking all over and saying how angry she was. At this point we had learned that asking why she was angry would only make things worse as she probably didn’t know anyway (point 2), so after a bit of frantic thinking along the lines of “how the heck do we handle this?” I decided the best strategy was to join in and share the angst. So I too clenched my fists, mirrored her body language and told her I was furious about it all and marched out the room saying I was going to deal with it! I then waited nervously in the hall for a couple of minutes before re-entering the room, proclaiming my relief that "the problem was sorted!”. It worked: She completely relaxed, thanked me and we moved on.

(If you’ve never been interested in drama before, now is the time to hone those acting skills!)

4. Be prepared to fight. I hope you don’t have the succession of negative experiences we have had but in case you do, be prepared to fight for appropriate medical treatment and care and don’t take no for an answer. Keep going until you get whatever is required as you are entitled to the support you need and it is available. Resources are there for the taking but not always allocated as wisely as they could be, IMHO!

5. Finally - and this should be point 1, but of course it never is as such is the nature of caring - think about yourself from time to time and make provision for your own needs. Caring takes its toll; it’s a relentless grind, both physically and emotionally, and while we routinely refer to “"the dementia sufferer"” in my view it’s the immediate family that suffers most.

Dementia is a prolonged death where you lose your loved one long before they finally pass away; it’s horrible to watch that process unfold as they slowly, painfully morph into helplessness and eventually oblivion. So do think about YOUR needs as your well-being and strength is essential if you wish to be able to continue to care.

My solace was provided by coffee and cake and whilst I’m now paying the price for that in terms of weight gain, there are no regrets. My frequent escape to the local tea rooms of Tring have kept me sane! (Sort of!).

Now my lovely MIL is being very well cared for elsewhere and whilst we’re still faced with those horrible ‘end of life’ issues, we now also have time to smell the flowers and enjoy family life once again; in fact, we appreciate the small things more than ever. And that's the benefit of bad stuff...it makes you appreciate the good...and you can learn from it!!

(From me to you: If this blog has been of help in any small way, then I'll be a very happy bunny!)