Dementia - facing the facts, what needs to be done...

Dementia is a life limiting condition, as are many forms of cancer and heart disease. Unlike the latter two, we have yet to find a way of fighting it.

Along with these well known diseases, dementia is also a killer. Unlike dementia, both cancer and heart disease are very much in the public domain. Everyone has heard of them. Dementia, by comparison, still lacks sufficient awareness in society - yet every single person will be affected by dementia, in one way or another. They may go on to develop dementia themselves, or a family or friend may one day be diagnosed with it.

The life expectancy of someone, once diagnosed with dementia, can be as short as three years or less! That is terminal! There are a number of reasons for such a short life expectancy - one may be age, but it is frequently due to late diagnosis, along with other complications that accompany the condition.

Whilst some forms of dementia may only begin to become apparent due to behavioural changes, others, such as vascular dementia, are linked to medical conditions such as hypertension (high blood pressure), diabetes and high cholesterol. Once a person is diagnosed with these conditions, screening for dementia should take place immediately. But, it doesn’t.

My Mum was diagnosed with all of the above, apart from dementia, quite a few years ago. Due to childhood rheumatic fever, she had suffered high blood pressure problems for much of her life. In the early 1960s, this directly led to the still-birth of my sister. Mum was not diagnosed with vascular dementia until 2011.

It wasn’t until I noticed a number of cognitive changes, that her Doctor listened and took note. With someone of Mum’s age (now 86), and her known medical conditions, screening for dementia should have happened much sooner. Whilst there is no cure, there would have been a better chance of delaying the progression of the condition with earlier, and more appropriate medication.

As it was, she suffered a small stroke in about 2006, and subsequent TIAs over the next few years. With the right treatment, these might have been avoided, or at least the effects minimised. Late in 2012 she suffered a serious UTI, which her Doctor failed to diagnose, the consequences of which had a major impact, both mentally and physically.

Mum is now in the mid stages of dementia. Cognitively she is still doing well, but she has lost mobility. Whilst she is able to move, she can no longer stand or walk. She is urine incontinent, and is partially bowel incontinent. She is still able to eat and swallow, but often gets distracted, if she is feeding herself.

She needs to be encouraged to eat and drink - fortunately she still has the ability to swallow. She is able to communicate vocally, very successfully, although she sometimes has difficulty in finding the right words, and if she fails, she creates a new word, based upon the correct word. Understandably, this can sometimes be quite amusing.

Of course no-one knows what will happen next. By comparison, when my Dad was diagnosed with multiple myeloma and cancer of the oesophagus in 1993, we knew he had approximately one year to live. Dad followed that prediction, and remained active, albeit in a much reduced way, until the last 72 hours of his life. We knew what was happening, and were prepared for the worst when it arrived.

With Mum, it’s different. Our understanding of dementia is still limited. Any disease of the brain can be life limiting. The brain ultimately controls all of our bodily functions, and as the brain slowly dies, it is less able to control other life essential functions, especially eating and drinking. As a result, someone with dementia becomes more susceptible to other problems, primarily infections, but also the possibility of blood clots, through inactivity. Some of the most common causes of dementia related death are pneumonia, UTIs, strokes, acute kidney injury through dehydration and DVTs.

Research needs to continue to focus on earlier diagnosis of all forms of dementia, in order to enable those who develop it, to live as normal a life as possible, for as long as possible. Once dementia is diagnosed, treatment needs to be pro-active, and revolve around quality of life, and not just an endless course of re-active treatments for conditions and infections, as and when they occur.

Until a cure can be found - dementia, in all its forms, is life limiting. Those diagnosed should be provided with the care and treatment required, to allow them to enjoy what limited time they have. Families should also be made aware, that like many forms of cancer and other diseases, dementia is terminal, there is, at present, only one ultimate outcome...