Your husband, mum, uncle, or friend has been diagnosed with Alzheimer’s. And, while you now know why their behaviour has been so erratic, you’re understandably worried about losing the relationship. But, not only is it possible to keep developing your bond, caring relationships are also known to be essential in helping people with Alzheimer’s live a life that continues to bring them pleasure and a sense of purpose.
Understand and communicate
Alzheimer’s is the most prevalent form of dementia, a group of diseases which we now understand are not a natural part of ageing, but a serious and ultimately terminal illness. It’s not forgetfulness, but rather a disorder that affects the brain, with the result that the person’s thinking, communication, behaviour and ability to do everyday tasks are impaired. The number of Australians with dementia is expected to reach 900,000 by 2050.
You may recall the Dementia Awareness Week campaign, which described the difference between forgetting your daughter’s birthday and, if you have dementia, forgetting you even have a daughter. With Alzheimer’s, a person’s brain function is affected in such a way that it interferes with their ability to maintain their social and working life.
Communicating with a person who has patchy, or even no recognition of you, will be different to how you were with them when they were completely cognisant. But it can help to remember they are still the person you love and there are many things you know about them that you can tap into in your ongoing relationship.
Here are four strategies for easing their anxiety, and yours, and developing a connection that enriches both your lives.
1. Take it slow
Think of being with your relative or friend as a chance to slow down a little and enjoy one thing at a time. We all suffer occasionally from overstimulation but, for a person who has Alzheimer’s disease, things like crowds, noisy environments or complicated tasks can be really disorientating and overwhelming.
So give yourself a break, too. When you’re with them, turn off the radio or television and talk about one topic at a time. Take a few minutes to brush their hair and, if they like animals, take a calm dog or cat in for them to stroke. Rake leaves in the garden together or walk to the shop for milk.
It will help if you don’t rush or do things that have more than three or four components to them. Going out together for lunch, for example, may involve going outside, sitting on a shady bench and sharing their 2favouritesandwiches—sublimely simple. Or, take them for a one-course lunch in a quiet cafe with easy access.
2. Honour the past
Remembering what you’ve loved about a person can be a wonderful experience for both of you. As their thoughts become increasingly disordered, Alzheimer’s Australia advises creating a visual diary of their life. This could include postcards, favourite photographs of celebrations, newspaper clippings or certificates.
Pick items that will remind them of happy times, loving relationships and their achievements.
When talking to them about these pictures or events, you could start by saying, ‘I remember when...’ to help them with context, then leave time at the end of your short reminiscence for them to chime in. This could take some time or they may not be able to find the words to express their feelings, but it doesn’t mean the memory doesn’t resonate for them.
Dabbing their favourite fragrance or aftershave on their wrists or looking at a magazine from years ago can also stimulate enjoyment and memories.
3. Go with the flow
For many Alzheimer’s sufferers, the loss of recent memory means that their past begins to merge with the present. When your dad says he’s late for an appointment with his solicitor, help him to get ready, even though you know he has no plans for the afternoon. It may just mean combing his hair, helping him into a jacket and setting off down the hall. This is called validation therapy and works on the premise that it’s more positive to enter their reality rather than attempt to bring them back to ours. Validating their experience of the world builds trust and adds to their sense of security. For you, it might be an insight into the past or a momentary detour from reality.
4. Tune in to their world
Note what promotes concentration, ease and laughter and what causes sadness, confusion and aggression. Build up a picture of their response to different stimuli and suggestions. Are they more active in the morning or evening? Does music make them calmer, or inspire dancing? Keeping a diary of positive and negative triggers can help you share a greater variety of positive times. It will also help you clue other carers into strategies that will help smooth their interactions.
Help is at hand.
Alzheimer’s Australia also has informative and easy-to-follow help sheets for carers and friends of dementia sufferers. Go to fightdementia.org.au and follow the link to Help Sheets. Or, call the National Dementia Helpline on 1800 100 500.