10 Things Everyone Living With Dementia and Their Caregivers Should Know

After spending more than 25 years working with people who are living with dementia, Professor Graham Stokes shares advice for affected families.

For anyone diagnosed with dementia:

1. Your life isn’t over

Please don’t write yourself off – dementia doesn’t erase you from the world. In fact, many people find that if they get diagnosed early enough they have the opportunity to live better than they might have anticipated. I’ve met some amazing people living with dementia who make an enormous effort every day to keep their minds active and stay engaged with the world.

2. You might feel much better after being diagnosed

I’ve lost count of the number of people who dramatically improve after receiving an official diagnosis with dementia and being prescribed one of the anti-dementia drugs, which can slow down memory loss for a couple of years. A diagnosis can actually remove quite a lot of stress too; the worry, ‘what’s wrong with me?’ disappears. This stress may actually have been contributing to their memory problems, so once it’s gone, it’s not surprising that many people find themselves feeling better

3. Start to slowly simplify your life

Dementia is an intellectual disability so it makes sense to adjust and simplify your life accordingly. If you do less, you have less to remember, and if you have less to remember, you have less to forget, and the stress and strain starts to disappear. You don’t need to make any sudden, dramatic changes though. Gradually, get a plan in place which may involve reshaping things to make life less demanding, but will still allow you to keep doing what you enjoy.

4. Think about where you live

We know that if you give people living with dementia a supportive environment to live in, they experience a slower rate of decline. Whilst dementia-inclusive communities are very beneficial in many ways, we spent 90 per cent of our time in our own home, so we need to make sure they are supportive too. Technological innovation is already making it easier for people with dementia to live their lives independently and safely, and more innovations and monitoring technologies are on their way, which could help to make your daily life more manageable.

5. Have a difficult conversation

In my experience, people who live with dementia don’t like to think ahead or consider what their life may be like in a few years’ time. This is entirely understandable, but if you can try to talk to your family and friends about the challenges you might face ahead, it could really help. At the very least it will mean that your loved ones will know and respect your wishes and desires further down the line.

For anyone who has a loved one living with dementia:

1. 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.

2. The person you love is still there

Family caregivers 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.

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 caregivers take on more and more, often without realizing 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 realize 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 specializing 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-centered 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.

Professor Graham Stokes has over 25 years of experience in specialist dementia care and is an internationally recognised authority on dementia care practice and policy.