If you are caring for a loved one with dementia it can be a truly formidable task and of course, few of us are really prepared for it. Being demanding both physically and emotionally and requiring almost limitless patience in a time-frame lead largely by the sufferer, it can also be very stressful. Having said that, it is easy to forget that the person with dementia is a person first.
There are some simple things you can do that can make a real difference to the wellbeing of the person you care for – and as importantly, to you. So whether you are an old hand or new to the experience, here are a few ideas and tips to try out.
Both research and experience show that asking direct questions can be intimidating to a person with dementia, so helping them to respond better will lead to a more natural and more engaged communication between you. Even the simplest of questions, such as "How are you feeling?", "What would you like for lunch?" or "Do you like this weather?" may be challenging to them. Instead, if your enquiries are light-hearted and suggest that you are 'alongside' them, for example "You’re looking well today", "A bowl of soup would be nice for lunch, wouldn’t it?" or "Shame about the weather, eh?" they may well help you both to have easier interaction.
The trick is to make your enquiries short, keep choices to a minimum and speak slowly and clearly in a low, relaxed tone. Given that you’re often going to have to repeat things, the best thing to do is to keep it simple – and try not to disagree. If the person seems to be rambling and is making little sense, try to listen to the 'key' words, as they may reveal the true message.
Face to face
Background noise like the TV or radio and other people’s conversations can be both distracting and confusing to a person with dementia, so it is best kept to a minimum. It really helps to look directly at the person – especially if they have sight or hearing difficulties – and when looking into their eyes, use a kindly, loving expression. To relate well with a dementia sufferer requires senses to be on high-alert and their eyes will often tell some of the story.
Eyes and looking
As a result of their difficulty in communicating, dementia sufferers tend to get trapped inside their own 'being', but they can get quite good at communicating and expressing themselves using their eyes, including anxiety, pleasure, interest, pain (either physical or emotional) and even boredom.
And of course, their eyesight may well be a problem for them, as it can be seriously impaired as a result of some types of dementia (even if their eyesight itself is still intact). They may find it difficult to distinguish between where objects begin and end, knock things over or bump into things, or even have trouble directing or changing the direction of their gaze. Again, keeping things simple around the home will help. Plain carpets and well-lit, tidy rooms will certainly help them to orientate themselves as well as possible.
Another trait of some dementias is that the person may think that they (or worse, you) have lost objects that are clearly there to the rest of us. As it would be for us, this can be both confusing and frightening, but you can reassure them by suggesting that you lost the item as well when you lead them to it: "oh look, there’s that jumper we were looking for!"
Some heartfelt encouragement such as "That’s brilliant, you are fantastic!" to a person whose self-esteem is diminished by their inability to remember or do things, can lift not only theirs, but your spirits too, even if the words may be forgotten only moments later. It’s all about 'living in the now'.
Knowing their history
If you know the person you are caring for has a particular idea about themselves that might now be causing a problem, knowing where it started may also be the beginning of the solution, so it can be helpful to learn more about and factor their childhood experiences into their behaviour.
Of course, words only account for 10 per cent of our socialisation – the other 90 per cent is the great unspoken communication through our body language and our tone of voice. There’s a knack to understanding what messages your own body and voice may be sending out – it’s all to do with keeping yourself open, relaxed and cheerful as far as possible and being respectful of the other person’s personal space. Regardless of how well you know them, it’s good to be very gentle and observant of their feelings if you have to do something personal for them and let them know what you have to do before you do it.
If a person with dementia does not want to talk to you, they will tend to avoid eye contact, fold their arms and/or fidget. Gentle touching can help, as it expresses mutual understanding and can reduce confusion.
Reminiscence can be very beneficial. What a person with dementia has to say about their life experiences is a great way of demonstrating their value as a person – both to them and you, and even when their memory storage system is inconsistent, to really engage with them while they remember happy times is therapeutic and valuable to you both. Old photographs are a great way to get going and since home and family (assuming it was relatively happy) is so central to all our lives, this may be a good place to start.
People with dementia can access a wealth of long-term memories although it works better if you can avoid direct questions. To help them, you can slip some facts into a comment while looking at (say) and old photograph, for example – "...oh look, there’s your brother Peter – he looks nice in that jacket doesn’t he, and there’s Freddie the dog, he’s looking very alert!"; now the person won’t have the embarrassment of having forgotten the person’s – or the dog’s name, and the comment might lead to other memories.
And while on the subject of pets, some people with dementia find comfort in stroking cuddly toys, so why not indulge them and find some new, really soft, stroke-able family pets – after all, they’re never going to need feeding or walking…
Pieces of soft fabric can also appeal – I know one woman who finds playing with a soft velvety toddler’s pram toy both fascinating and soothing.
Take a break
If the person you are caring for is really challenging your patience, the best thing to do is to take a break (and try not to feel guilty about your feelings, you will be all the more useful to the person when you are refreshed). If possible, try to find other people to support you by giving you some respite and give yourself some space.
The ultimate gesture
But perhaps the ultimate gesture, that costs nothing, pays us back by releasing endorphins and helps all our relationships, is quite simply, a warm smile. Use it freely – and often.
Sarah Reed is the founder and creator of reminiscence activity 'Many Happy Returns', a set of cards for younger and older people to share, with pictures and words that are reminders of people’s everyday memories where most of their experiences reside, making conversation easier and more fun and helping to capture family memories that would otherwise be lost. She has fifteen years’ volunteering experience with two national elderly people’s charities. Her mother has had dementia for nine years.