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That first conversation about dementia

January 2019

Elderly couple sitting at table
It can be difficult to talk about dementia

Christmas and New Year is usually a time which brings loved ones together.
It’s common that during this season you may have noticed a change in how your loved one is behaving, particularly if you haven’t seen them for a while. Sometimes it may be nothing to worry about, but on other occasions it may in fact signal the beginnings of a health issue. 

There are currently over 850,000 people with dementia in the UK, with numbers set to rise to over one million by 2025. One in six people over the age of 80 have dementia, and with an ageing population this is only going to increase.

Having a conversation with a loved one about dementia can be difficult but John Ramsay, Chief Executive Officer of Shift8, a social enterprise organisation that is introducing a Dutch dementia care innovation into the UK, provided Laterlife with some advice:

Do your research

Ahead of chatting with your loved one about dementia, make sure you’ve done thorough research. There’s plenty of advice and guidance online on various websites ranging from the NHS through to Dementia UK. There are online guides and leaflets as well as helplines you can call for extra support too, such as the Alzheimer’s Society National Dementia Helpline. Your local community is another great place you can turn to. Community hubs, such as libraries and the Dementia Club UK, offer a safe space for you to discuss any concerns you may have and offer advice on activities you and your loved one can partake in going forward. By increasing your knowledge, you’ll be able to understand what your loved one is experiencing and will be able to hold an honest and open conversation with your friend or relative about dementia. This also means you’ll be able to offer suggestions for next steps which will help you both to remain positive.

The dementia journey

When it comes to dementia, it’s important to realise that it’s a completely individual experience, reflecting the complexity of the condition as well as the dozens of different forms dementia can take. There are different symptoms associated with dementia and these can range in severity. Generally, dementia can be seen as a combination of symptoms including memory problems, cognitive ability and communication, which means that no two cases are the same. As a result, it becomes crucial to reserve judgement and remain flexible in your approach. If your loved one is having trouble processing information and is often struggling to find the right words but doesn’t have memory loss, you can’t jump the gun and assume there are no issues. It’s vital to be empathetic and remain as understanding as possible without making a judgement. 

Pick your words

As our understanding of dementia has increased, so too has the vocabulary surrounding it. It’s common to see words such as ‘suffer’, ‘disorder’ and ‘no cure’ being used in context with dementia. However, such words and phrases are incredibly negative and immediately cultivate bleak prospects for the future. Yet living with dementia needn’t be this way. Even though there is no known cure, it’s possible to live an active and fulfilled life – and this in fact slows down the process, so should be encouraged. Take a few moments to consider the words you plan to use when addressing the topic of dementia with a loved one. Try switching the word ‘suffer’ for the phrase ‘living with’ and ‘disease’ for ‘dementia journey’. This will make a real difference in the tone of the conversation and will ultimately help to create a more positive approach to the situation.

Ultimately, although dementia can be a challenging journey, not only for the individual but for friends and family too, it’s vital to remember that having as active a lifestyle as possible is imperative. You’ll witness your friend or relative change as their dementia progresses but fundamentally, they are still the same person. When it comes to dementia it needn’t be the end after a diagnosis, and instead take it as an opportunity to develop your relationship with your loved one further and focus on creating happy memories together.

You can find out more about the Dutch dementia care technology Tovertafel™ at tovertafel.co.uk and the social enterprise organisation, Shift8 at shift8.co.uk


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