How To Talk To Children About Dementia
It’s Dementia Action Week from May 20, so we asked the experts for their advice on helping younger members of the family understand their loved one’s condition, and ways to create happy moments together…
With more than 1 million people set to be diagnosed with dementia by 2025, there is an ever increasing need to create a dementia friendly society, and a key part of this evolution involves talking to children about dementia.
Even if they don’t have a relative with the condition, there is a high chance they will encounter someone with dementia in their lives, as our ageing population means it will affect everyone in one way or another.
Approaching the subject can be difficult, as many parents are afraid of upsetting their children, but it is important to remember that attitudes are set as children, and by broaching this subject early, we can go a long way towards breaking down the stigma and isolation that those living with dementia face on a daily basis.
Bedtime stories…
A great way of explaining dementia is to turn the dementia journey into a bedtime story. Dementia can be a complicated condition to explain, with its multiple symptoms and complex causes, so make sure to simplify your language. There are plenty of books available, such as Juliet Rix’s Travels with my Granny, which have already done the hard work for you, and can help inspire you with your own story.
Pic: Istockphoto
When you’re explaining what it’s like to live with dementia, try and focus on the more common symptoms, including confusion, memory loss and short tempers, as this will help the child understand how a person living with dementia sees the world.
Examples are your best friend in this situation. One of my favourites is if you were to imagine you were walking to the shops and someone suddenly tried to get you into pyjamas – you would be confused and probably angry. Encourage the child to listen to what the person is saying and teach them to give that person space to be where they think they are at that time.
Doing activities with your loved one who has dementia is a great way for children to recognise these times for themselves and can also help them feel more comfortable. There are different stages of dementia which can impact the types of activities they can do. For those with early-to-mid stage dementia, playing games like snap or snakes and ladders is a great way to stimulate engagement. If your relative has mid-to-late stage dementia, traditional games become less effective as symptoms evolve, so it is worth doing research to find more specialised games specifically designed for this stage of their journey.
While introducing the topic of dementia to children can be challenging and can feel overwhelming, with a little preparation the benefits will quickly outweigh these concerns.
Create happy moments
John Ramsay, the CEO and founder of Shift8* – the social enterprise, which is bringing Dutch dementia care innovation the Magic Table to the UK, shares his story…
My father was an established orthodontist and in the prime of his life at 52 when he was diagnosed with early onset dementia. I was 12. Everything felt so immediate, suddenly he was unable to finish daily tasks he once completed with ease. As a young teenager, I spent the majority of my time helping to care for him. While it was tough, I learned so much, including how to make him still feel valued and the best methods to interact with him.
Dementia has become one of the most significant health challenges of our time, with over 850,000 UK residents impacted by it. Today, somebody is diagnosed with it every three seconds, and the count continues to grow steadily. However, with the introduction of the latest technologies, and compelling research from world-class health professionals, we’ve witnessed greater sharing and unity in the community, as well as encouraging others on how to think more creatively in their approach to dementia care.
While dementia can have detrimental effects on a person, no one should be defined by it. Each individual will have their own unique journey and different experiences when dealing with dementia, but there are ways to ensure you and your loved one can create many moments of happiness together with a number of practical and straightforward changes that can be incorporated into day-to-day life.
Research has revealed nine methods to stimulate people on their dementia journey, these include humour, optimism, awareness, a sense of safety, personal attention, a sense of community, relaxation and reminiscence.
Here a few methods that can help you and your loved one continue to create more happy moments together…
Think carefully about the environment
Creating the right environment is crucial to ensure a high-quality standard of living for your loved one. They should feel calm and relaxed at all times, as opposed to feeling tired, which can lead to agitation.
There’s no one size fits all strategy when it comes to creating the optimal environment as various forms of dementia affect different areas of the brain. However, the general rule of thumb is to limit changes wherever possible to reduce the likelihood of confusion and focus on creating a positive atmosphere for your nearest and dearest. Whether you’re taking part in recreational activities, making a cup of tea or just discussing your childhood memories it’s often enough to invoke a happier experience for your loved one.
Revisit happy memories
One of the main symptoms of dementia is the lack of clarity between long and short-term memory, which can be unsettling. Understanding the full impact dementia has on people, and their memory is essential. I recommend using the analogy created by The Alzheimer’s Society – a bookshelf, filled with books that contain skills and memories that have been collected over a lifetime, with the short-term memory books at the top and the long-term memories at the bottom. Envision the bookshelf getting hit with dementia, it shakes, and the top books start to topple off. This is how the confusion can begin, as someone with dementia mixes all the books together, causing them to think that their most recent memory could, in fact, be from their childhood.
Rather than getting frustrated with your loved one, this is the perfect opportunity to bond over old memories or learn something new about them. My father was a big rugby fan, and I made sure we continued to watch it together and discuss his favourite matches with him. It was a beautiful experience to watch his eyes light up as he recounted the games he watched as a boy, subsequently bringing me and my family joy as well.
Gameplay
Dutch innovator, Hester Le Riche, conducted research that showed the amazing effects playing games can have on people with dementia. Dementia can cause people to feel very isolated and remain passive for the majority of the time. By playing a game, your loved one can feel stimulated, resulting in a better quality of life.
For this to work, the game must be tailored to suit different stages of dementia that can dictate different experiences and conditions for your loved one. For example, experiences that are suitable for people with early-stage dementia include upheaval, challenge, fellowship and humour. Another factor is participation; you must keep motivating your loved one, keep their spirits high and keep to a pace that will give all players enough time to react.
Unite with your community
Your local community may have more to offer than you know. If your relative lives at home with you, visiting a dementia friendly community hub, such as a memory café or a library can be beneficial due to their safe and welcoming environments. In fact, care homes, libraries and hospitals are starting to bring technological innovations to their facilities by installing the Magic Table – an interactive light game for those living with different stages of dementia. It works by projecting images that are bright and enticing but can also invoke nostalgia with games such as sweeping of leaves or popping bubbles.
As I continued to care for my father, I learned the best way to interact with him and adapt to his moods was to ensure he was mentally stimulated daily. By considering the factors listed, my family and I were able to create countless moments of happiness together, memories I hold dear to this day.
Allison Hay
I joined the "My Weekly" team thirteen years ago and, more recently, "The People's Friend". I love the variety of topics we cover both online and in the magazines. I manage the digital content for the brands, sharing features and information on the website, social media and in our digital newsletters.
