What do you think of when you hear the word ‘dementia’? The medical definition talks about a decline in cognitive functioning with physiological abnormalities in the brain, which is progressive, chronic, irreversible and without a cure. Pretty depressing stuff I think you will agree and not very helpful if you want to support someone to live well with dementia.
I prefer to think about dementia as a failure to store new information and experiencing difficulties with some or all of the following: processing information, problem solving, language, perception of objects, behaviour and mood.
There are 100 or more causes of dementia and the most common are Alzheimer’s disease and vascular dementia. Some symptoms are common across all dementias while others are more likely to occur in one specific disease. All dementia is progressive and unique to each individual. No two people will experience dementia in the same way.
People living with dementia continually search for new information to try to make sense of the here and now. They just don’t have the information stored in their short-term memory that we have at our fingertips. Some people use a non-verbal way of searching for information such as ‘wandering’, which could be more aptly described as ‘wondering’ in the context of people living with dementia.
How we respond to the person, and how supportive or enabling their surroundings are, will greatly affect how well someone can live with dementia. Here are 5 ways you can help someone live well with dementia.
1. See the person not their dementia
You cannot care for a person unless you care about them and to care about them you must know who they are.
Behind every label and statistic is a unique individual so before looking at what they need, make sure you find out who they are.
A one page personal profile and life story work will help enormously with this. What was important, good and bad about their childhood, school days, working life and retirement? What music did they like? What makes them happy and sad? How do they like to be supported?
One of the greatest gifts we can give someone with dementia is help him or her get back to old happy memories from the past.
Relationships are important to human beings yet tend to get forgotten when someone living with dementia needs care. The same happens with their personal assets, which seem to disappear into oblivion when needs are being assessed. We need to take account of personal relationships and assets to help put humanity back into services for people living with dementia.
2. Feelings are important
A person living with dementia will always know how they are feeling but will generally not know why because this information will not have been stored. There is a large continuum between feeling OK and feeling totally traumatised. The person will track back through old memories to make sense of what is happening now and this search will be based on feelings. We all need context, a sense of the here and now and you can support the person by helping them access old happy memories to create a positive context.
Feelings matter more than anything to a person living with dementia. Although they will forget facts such as names, places, faces and numbers they will continue to experience feelings until the end of their life.
The following examples help to illustrate this
You’ve been to visit your mother who is living with dementia and you had a huge row. You go away thinking it doesn’t matter because she will probably forget about it.
Now she may forget what the argument was about and even your visit, but her feelings of hurt, sadness and maybe humiliation will stay with her.
Here is another. You’ve been to visit your mother and you both had a lovely time but she called you by the wrong name. You wonder whether you should bother to visit her anymore because she won’t remember.
Your mother may not remember your name but she will remember how you made her feel – loved, comforted, secure and happy.
3. Don’t ask questions
If people living with dementia have difficulty storing new information we need to stop expecting them to find the information by asking questions, which are after all, a direct request for information.
You begin your visit with something like ” You are looking well today” rather than “How are you?” Even a basic question such as “What would you like for lunch?” requires quite complex processing “Have I got to cook the meal?” “Why lunch when I haven’t had my breakfast yet?” “How will I cook the meal?” ” I may not remember where to find everything” “What if I can’t remember how to cook?” You need to find subtle ways to offer choice such as “I fancy some lunch now. Let’s see what’s on offer?” or “What a lovely smell. Shall we see what it is?
4. Don’t contradict
Never contradict or argue with a person living with dementia. Present statements instead. It’s not about colluding or lying to the person, more about entering their world and going with their current reality.
Here’ is an example to explain what I mean. You suggest to your mother who is living with dementia that you put the kettle on to have a cup of tea ” Your mother tells you it will be better to wait until her mother comes. Rather than correcting her by saying “Granny is dead you know” it is better to say something like “Silly me I forgot ” You haven’t lied to her. Your mother just hasn’t t retained the information that her mother is dead.
However if when you arrived, your mother asked ” Is my mother dead” she has already found the information so you might gently squeeze her arm and say something like “Granny died a few years ago Mum. You can see her twinkling on a starry night if you look carefully”.
5. Listen to the expert
The person dealing with dementia is the expert in their dementia and everything they do has a meaning behind it. They will tell you everything you need to know if you just listen with your eyes, as well as your ears and give them your full attention.
We cannot reverse dementia, or take it away, but we can promote a good quality of life no matter how advanced their dementia is.
We have the ability to tune into the persons feelings, allay their anxieties and help them live an enjoyable, relaxed, calm and contented existence.
I’d like to conclude with something Terry Pratchett, the well-known author who is himself living with dementia, said recently. “I am lucky. I am in a place where I can be me”
I would like everyone living with dementia to be able to say the same.