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Dementia: finding your way through the maze

Beth BrittonĀ is a freelance feature writer, blogger and dementia campaigner. Beth's father had vascular dementia for the last 19 years of his life. With her experience, she aims to provide support and advice to those faced in similar situations.

Here Beth talks about balancing your life with the needs of those you care for.

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Beth Britton

dementia is not a normal part of ageing

User AvatarPosted by Beth Britton at 27/07/2012 14:30:25

The possibility of developing dementia is widely regarded as something people fear the most as they get older. Statistics back up just how stigmatised this disease remains, with on average fewer than half of people with dementia receiving a formal diagnosis. Even people with a diagnosis have often waited far longer than they should have, and post-diagnosis, do not receive the support that they need. 

There is a widely held belief that memory problems and difficulties in completing simple everyday tasks are just a normal part of aging, and the terror many people have of being “labelled” as having dementia means that they can often try to hide the difficulties that they are having from family and friends. Yet dementia could not be further from being a normal part of aging; it is a disease of the brain which, just like any other disease in any other part of the body, is best caught early and treated. 

No cure does not mean no hope. Early diagnosis empowers people with dementia, enabling them to make choices and decisions themselves, rather than relying on others to do that in the future. It also provides answers to the problems that they are experiencing, enabling them to cope better and make the most of every day. Loved ones also benefit  from the chance to be actively involved in improving the person’s quality of life from the very start of their dementia journey; for example by sharing in some of the pleasurable therapeutic interventions (such as music, art, sport, gardening and exercise) that can help to manage or even reduce symptoms. 

The idea that you can live well with dementia is one that has not really reached the public consciousness to date. Yet I would say, from people I have met who have been given an early diagnosis and are leading active and fulfilling lives, right through to the latter years of my father’s dementia, there is positivity to be found and good times to share, you just need bravery, humour and every ounce of love that you can give. 

My father went ten years without a diagnosis. Looking back now, with the knowledge and experience I have, it was so obvious what he was going through, but then hindsight is a wonderful thing. What I am certain of, however, is that had we known and understood what was happening to him from the very early stages of his dementia, his life and indeed ours would have been very different. 

Over time dementia may change a lot about a person, but it does not change the love you share. Nothing takes that away, but stigma, fear and misunderstanding of dementia will rob you of precious moments to appreciate all the wonderful things about your loved one. The dementia journey is never one you want to take, but like all journeys, it is always better to be prepared.

You can also read my previous post 'the juggling act'.

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