In the UK at the moment there are around 800,000 people living with some sort of dementia. Sounds a lot right? Well that’s only the individuals who have received a diagnosis. It’s estimated that just over half of those with dementia have a formal diagnosis, meaning there are still so many people in the UK living in confusion, struggling emotionally and physically due to the effects of this disorder. In Scotland, an estimated 90,000 people have dementia, with 3,200 of those being under 65’s.
Between May 30th and June 5th 2016, Alzheimers Scotland are hosting a Dementia Awareness Week in order to crush some of the more common stereotypes of dementia and to raise funds for those who are affected by this disease. Unfortunately, the number of people living with dementia is on the rise, and by 2025 it is estimated that in the UK we will have over one million people diagnosed as having some level or form of dementia. I’ve been working with people in various stages of dementia for over four years now and I can say that although stressful at times, getting into care was one of the best career moves I’ve ever made. In writing this I’m hoping to dispel some of the more obvious assumptions about dementia.
Progressive disorder of the brain
Dementia is an illness that can be very aggressive, leading to a fast and steady decline of the person from the time of diagnosis. At other times it can be a long, drawn-out process with some of those diagnosed living for 10 years or more after an initial diagnosis. Either way, it is what is known as a progressive disorder of the brain. The word dementia itself is an ‘umbrella term’, covering the hugely varied range of symptoms experienced by those diagnosed.
Alzheimers Disease is the most common dementia type. This is when the structure of the brain and its chemical reactions change and so brain cells begin to die. Short term memory loss is one of the main symptoms, followed by forgetting words and even family names. Another ‘branch’ is Vascular Dementia, usually caused by a lack of oxygen to the brain. The most common cause of vascular dementia is a stroke. A person dealing with Vascular Dementia will have memory problems and may struggle with concentration or to follow a recipe for example. Another very common type of dementia is Korsakoffs Syndrome. Although technically not a dementia, this form of memory loss is caused by alcohol-related brain damage from long periods of heavy drinking. Korsakoffs is a form of dementia that is on the rise as younger people are drinking more and more. The effects of Korsakoffs level out once there is no more alcohol consumed, but those with the condition will rapidly decline if they commence drinking again. Dementia with Lewy Bodies (DLB), although a dementia, is more of a hallucinatory condition, where sufferers will often reach out to pet animals or pick things up off the floor when nothing is there. This can be caused by abnormal protein deposits (known as lewy bodies) being deposited in brain cells. These deposits are also found in brain scans of people who have Parkinsons disease, although DLB is not as easily diagnosed, and it is a much faster progressing illness.
Music can be a lifeline
A fascinating detail about people who have dementia is the really positive effect music can have on their general wellbeing. People who have dementia or limited communication skills can still demonstrate the ability to sing and remember the lyrics to hundreds of songs, mainly from their past. Music is something that joins together people from different generations and walks of life, and in a nursing home setting is something that is regularly used to encourage peacefulness amongst the residents.
The most common preconception of dementia is that it is just ‘old age’ or ‘just a part of growing old’. Although memory problems can become more obvious as people age, neither of these are true as dementia is a form of brain damage and therefore more of a mental health issue than anything else. When the brain begins its break down people begin gradually regress backwards through their lives, on many occasions forgetting about important events such as births and deaths, and can even reach a stage where they think their own children are their spouses. An awfu lot of people with dementia can also undergo huge personality changes, with some becoming aggressive or developing new addictions, as well as using language they’d previously have never used and some even become more sexualised. Senses can be affected as well, with many of those diagnosed having problems with poor sight and hearing, as well as taste, touch and smell being badly affected. Food loses its smell, and every meal might taste just as bland as the last one. Dementia can also bring struggles with perception of distance and colours. A blue rug, for example, could appear to be a puddle of water, a change in carpets may look like a step and this could cause a problem due to the person perceiving this change to be a long step or a deep pool and being unwilling to walk through it for fear of causing themselves or others an injury.
Quite often people who receive a diagnosis will keep quiet or stay in denial for a long time. This can be because they think it will help their prognosis, or often they worry they’ll be treated differently. People with a dementia diagnosis can be quite quickly treated like frail and incapable members of a family or household with families quickly trying to take over daily activities in order to lessen the impact of life on the recently diagnosed. This often causes friction as first or foremost a person with dementia is still a person!
In England, Dementia Awareness Week ran this year from the 15th of May until the 21st, but the same principles applied. The main thing that you need to remember if someone you love is diagnosed, is regardless of the dementia, that person is first and most importantly still that same person, no matter how deeply they may be buried in their own memories.
So take a step back for a moment, and consider supporting your local dementia charities (they’re always looking for befrienders). And hopefully one day we’ll have a cure for this terribly cruel disease.