Having worked with older people for over 30 years, including people living with dementia, one, one of the most common questions Beth McDougall gets asked is: ‘What is the difference between Alzheimer’s and dementia?’ This is an indication that despite the progress we’ve made in the last few years to raise awareness, there’s still so much more we can do.
September is World Alzheimer’s Month and is an appropriate time to have a discussion on a topic that most people would prefer to ignore, but which affects more New Zealanders than ever before.
Alzheimer’s is the most common type of dementia, accounting for about two-thirds of dementia diagnosis. But it is just one just type of dementia, there are around 100 different types of dementia.
For many people living with dementia, their biggest fear is losing their personality. Alan Keen had mixed emotions upon receiving his dementia diagnosis.
“One side of the coin was I knew what was causing it, which was nice to know, it’s a relief in some ways. The next side was that there was no coming back out of the hole that you’d fallen into,” he says.
Here are the five top things people living with dementia have shared with Beth McDougall over the years, along with Alan’s experience.
- I am still the same person I have always been
“I’m still me,” says Alan. People with Alzheimer’s still have the same likes and dislikes as they did before their diagnosis. For most people living with Alzheimer’s it is so important to them not to be defined by their condition, rather they should be defined for the person they have always been. They have the same sense of humour, value the same things in life and want to be treated as they always have been. Over time as their condition advances, you will notice changes in their behaviour; they will become more forgetful or possibly distant, but it is important to focus on the things that make them who they are. For example, if they like jazz music listen to their favourite songs with them, or if they enjoy gardening, go out and sow some seeds.
- I can live well with dementia
Staying physically and socially active is really key to ensuring the wellbeing of a person living with dementia. Seeing people socially and staying involved can prevent someone becoming isolated and depressed. Regular exercise can help to keep them fit, but may also help them to form good sleeping habits so they – and their carers – are more rested. While staying physically and socially active can be beneficial, it is important not to force it. It is important to let the person with dementia be who they have always been. So, if the person living with dementia has always been introverted, the person who’s caring for him will need to balance the benefits of social activity with the fact they may find it quite distressing to suddenly change their social habits.
- Focus on what I can do rather than what I cannot
For people living with dementia, unfortunately the focus is often on what they can’t do rather than what they can do. They may stop being asked to babysit their grandchildren or do the little things like make a cup of tea when there is no good reason. This can feel disempowering, especially if they are still able to do these things. There will be things that are challenging for a person living with dementia, especially as the condition progresses, but it is important to focus on the things they can do and support them with the things they cannot. Alan knows how valuable this is: “It is just as important to help somebody enjoy what they have got of life and what they can do, rather than emphasise what they can’t do,” he says.
- I can still have meaningful relationships – do not be shy around me
During the early stages of dementia people are still able to communicate as they did before. However, as the condition progresses, the ability to communicate verbally becomes more difficult. It’s important to remember that the person can still show emotion and affection, so you will still be able to have a laugh together, or share a heart-warming moment. “A person living with dementia will use a behaviour to communicate, so all behaviour has meaning. The challenge for us is to work out what the person is telling us through their behaviour,” McDougall says. You can help by using clear questions: instead of saying ‘would you like to go outside or stay in today’ just say ‘would you like to go outside?’ “One guy said to me, ‘There’s nothing wrong with you’. I said, yes there is something wrong with me, a few things I can’t do, a few things I’m unable to do, but I’m still me. He said ‘fine, I’ll have a game of croquet with you anytime!'” says Alan.
- I still need companionship, even if I don’t remember that you’ve been here
If the person is in the later stages of dementia, they may not remember you visited them, or know who you are – but in the moment you’re with them, they are able to enjoy your company. From birth, we seek companionship; someone who makes us feel safe and loved; we do not like to feel lonely. Although the person with dementia may forget that they saw you today that feeling of companionship can stay with them throughout the day.
We can all help to create a dementia-friendly New Zealand. What does Alan think would be the most useful thing? “Be helpful, is probably it in a nutshell,” says Alan.