It’s World Alzheimer’s Month and this year’s theme ‘remember me’ highlights the importance of early dementia diagnosis. But don’t worry (and don’t blame yourself) if your loved one’s diagnosis came a bit later than you would have preferred. Bupa’s Global Director of Dementia Care Professor Graham Stokes has spent more than 25 years working with people who have dementia and has this comforting advice for families and carers.
1. The person you love is still there
Family carers are under a huge amount of pressure, and when loved ones start to act in unfamiliar or unpleasant ways, they often think, “the person I love has disappeared,” or, “it’s just not them anymore”. However, if you can tap into who they truly are (which involves learning everything you can about them) you are very likely to find that the person you love has not disappeared, they are just behaving differently because they’re trying to live in a world which feels unfamiliar and can be very frightening.
2. Learn everything you can about them
To truly understand someone with dementia, you need to know their life story. Loved ones often think they know the person inside out, but they usually haven’t delved too deeply into certain areas or looked very closely at their loved one’s life before they knew them. People are complicated – they have depth to who they are – and people with dementia are no different. As their dementia progresses, they might behave in ways that seem unlike them, or even bizarre, but there’s always a reason. If you truly understand them and the life they have led, you will be far better equipped to make sense of it, work out what they’re trying to tell you and help them.
3. People with dementia can be very resourceful
I truly believe that a person with dementia tries each day to do exactly the same as everyone else. They wake up each morning and do their best, and they do this with an intellect which isn’t what it was, whilst living in an environment which isn’t always as supportive as it could be. Sometimes their efforts get them into enormous difficulty (and can cause great stress and worry for them and their families) but even when their dementia is quite advanced, they continue to try.
4. Know when you have had enough
As dementia progresses, family carers take on more and more, often without realising how difficult it’s become. It’s a bit like being a parent. You don’t see your own children grow, because you see them every day. It’s only when you step back and someone else says; “haven’t they grown?” that you realise they have. So, if someone asks me; “when do I know it’s time for my husband/ father/ mother to live in a care home?” I tell them they already know… It’s when they start telling themselves they can’t go on. It’s important not to ignore the voice in your head that’s saying this. If you’re struggling, say so and ask for help.
5. There are reasons to be hopeful
When I started specialising in the 1980s, dementia care was all about dealing with the symptoms of the disease. People living with dementia were living in hospitals, mental institutions and EMI (Elderly Mentally Infirm) units. Since then, there’s been a transformation in care, understanding and attitude. The legacy of many people I work with today is that they’re benefiting future generations in the way they might live. I’d like to think that if I ever developed dementia I wouldn’t be scared. I’d hope that those who know me most might have a sense of what I think, and of what would make me happy. The message of person-centred dementia care is simple: Get to know me, stay close to me and although I might seem different to you, I am still the same person. Let me live a life that you know I might want to live.