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Thursday, 24 June 2021
DEMENTIA is a difficult
subject. It’s one that can get brushed to one side as with many things that scare or worry us.
But lacking in cheerfulness as it is, it is nevertheless important for us to address, both on a societal level and on an individual one.
Estimates suggest that there are more than 850,000 people with dementia in the UK and this is a number that is projected to rise threefold by 2040 alongside an aging population.
One of the most important issues this raises is that, with just the existing numbers, there are around 540,000 carers of people with dementia in England alone and it is thought that one in three people will care for someone with dementia in their lifetime.
While, at its core, dementia is a medical issue — the burden on the NHS of patients with dementia, who often have a higher number of medical
co-morbidities, is massive — the social issues it poses are arguably even greater.
The term dementia stems from the Latin demens, meaning madness, and historically was used to describe all manner of psychological issues including schizophrenia.
Currently, the term is one we use to describe not an illness but a group of symptoms stemming from damage to the brain.
Used alone, it is in some ways a frustratingly ambiguous term offering only an idea that there is some damage to the brain but not offering up any more detail than that. It is only when the underlying cause is identified that one can glean what symptoms one might experience and what course one’s symptoms might follow.
With more than 200 subtypes, symptoms can be surprisingly varied. The most common one people might think of is problems with memory, but with some forms memory may not be the primary issue, with movement and co-ordination issues, word finding and personality change just some of the other potential features.
In the UK, the most common cause of dementia is Alzheimer’s. This was first described by German psychiatrist Alois Alzheimer when in 1906 he noted plaques within the brain of a 50 year old woman who had been exhibiting signs of dementia.
It is now thought that these plaques and tangles accumulate and get in the way of the transmissions between all the complex neural connections within the brain, eventually causing death of the cells most affected.
The effect of Alzheimer’s is gradual. One might experience issues with concentration, communication, reading, writing, numeracy and planning. Short term memory loss is seen far more than long term loss.
Vascular dementia is one of four other common forms of dementia (the others being Lewy body — associated with movement and co-ordination symptoms akin to Parkinson’s Disease — fronto-temporal and mixed dementias). Vascular dementia is often less gradual than Alzheimer’s and tends to follow a stepwise pattern. It occurs when the blood supply to the brain tissue is interrupted either in one fell swoop, most commonly after a stroke, or through a series of smaller undetected strokes.
There are lots of risk factors associated with all types of dementia. As with many medical conditions, a healthy lifestyle, not smoking, moderation of alcohol intake and plenty of exercise are protective factors. For certain types, particularly young onset dementia, which affects those under the age of 65 years (affecting around 42,000 people in the UK), genetics play a part.
As we age, it is natural for us to slow down a bit and our minds may not be quite as sharp as before. If one notices this happening, it is not necessarily a sign of dementia. On the other hand, all too often, it is only natural to put memory loss or not being able to navigate a previously familiar route in the car down to the natural aging process.
In such cases it is always worth seeing a doctor. On average though, around half of people with Alzheimer’s wait around a year before getting help. One might say that if there is no cure for dementia why bother highlighting it? The popular author Terry Pratchett said that “it occurred to me that at one point it was like I had two diseases — one was Alzheimer’s and the other was knowing I had Alzheimer’s”.
It is true that being aware of something so fundamentally life changing can be a huge psychological burden in itself. The truth is that at some point, if one’s cognitive issues are due to dementia, it will need to be addressed.
There is a good argument to say that, if you have had time gradually to come to terms with the diagnosis rather than worry secretly over months and even years, outcomes can be far more favourable and quality of life can be comparatively better. It may also give relatives time to adjust, plan and give you an opportunity to create things like memory books, get your financial affairs in order, perhaps by appointing a lasting power of attorney, and ensure your wishes about things like resuscitation and wishes for your future medical care are well documented.
It is worth noting that various reversible problems can mimic dementia, including thyroid issues, deficiency in B12 and depression. If presented with concerns about memory, a doctor may want to perform some initial blood tests to rule these out. They may also want to ask a series of questions to test things like short term memory.
If there are ongoing concerns, they may make a referral to a memory clinic where specialist doctors will investigate in a bit more detail, often arranging a CT scan of the brain. If, ultimately, it is felt that one has a form of dementia, there are a handful of medications that can delay the symptoms and so, for all these reasons, it really may be beneficial to get things checked.
In later stages of dementia, it is a sad fact that sometimes things like personal care will become impossible without the help of a carer or relative. This has a huge impact on the life of the carer.
For many, it is a full-time job and can be distressing, for example if that person is a spouse or child. In moderate or severe cases, patients can sometimes become agitated, aggressive and suffer from hallucinations or delusions. Sleep can be interrupted due to wandering behaviours and all of this can impact upon the mental and physical health of the carer.
There is always room for improvement in the support available in such instances but there are already organisations doing their best with the available resource.
Admiral dementia nurses work locally who can provide a point of contact for any practical matters and who can offer advice. Carers may want to ensure they are receiving all the benefits that are available to them by registering as a carer and by applying for help with things like shopping, training as a carer and applying for respite care in order to give them a break. AgeUK, the Alzheimer’s Society and Dementia UK are all very good organisations that can provide help and advice, so their websites are well worth looking at.
Patients, relatives and healthcare professionals can sometimes feel helpless in the face of dementia. There is no “cure” as such but to dwell upon this is perhaps pessimistic as there is much that can be done to help both patients and carers.
Being realistic is important. Concentrating on ways to reduce the distress and frailty associated with dementia may bear fruit. Certainly there is plenty of research going on with dementia as a focus, though far less than things like cancer, but measures to alleviate the effects of dementia don’t have to be purely medical.
Psychological support for patients and their carers, maintaining comfortable, familiar, reassuring environments, providing opportunities to listen to and play music or pursue hobbies like art and keeping the brain active with puzzles and crosswords, alongside simple practical assistance, can make the biggest difference. This of course all costs money.
At present, dementia costs the UK around £32 billion annually, around two thirds of that coming from either the individual or their families.
Social care remains an unresolved issue in the face of future demands and has been under scrutiny for some time. It is of vital importance that the current and projected social care demands are acknowledged and met in the coming years.
The human body is not used to the diets and lifestyles we subject it to nor is it used to living to such old age. Though there may well be medical advancements to help us with this in the future, some factors may just be beyond our control. As ever, maintaining a healthy lifestyle is the best thing one can do to reduce the risk of developing this cruel condition.
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