A Personal View of Dementia by Journalist and Newspaper Columnist Helen Martin
Dementia – most of us are familiar with the term as the numbers of those affected rises at an astonishing rate. And many of us will have personal experience of relatives and friends suffering from the condition.
I certainly have, and as a journalist have become more involved with the subject over the last several years, during which time I have learned how little those with no direct experience know about it, and how misunderstood dementia can be.
I am not medically qualified. I know not everyone will share my opinions, some of which are based on fact and some formed as a way of reconciling myself to witnessing dementia decline. But this is certainly a subject we all have to discuss and consider.
Just as every individual is different, every dementia “journey” is different. There is no one-size-fits-all pattern of the development physically or mentally. Nor is there a great deal of consistency in how relatives respond to the varying challenges it brings.
There are several types of dementia, the most tragic of which is early onset Alzheimer’s which can afflict those in their fifties. But the majority of cases are age-related. Even within the elderly population, there are different types of the condition, some of which, historically, came under the politically incorrect and rather depressing umbrella term of “senile dementia”.
But therein lies the clue to the increasing prevalence of it among the elderly. Thanks to medical advances, conditions, diseases, infections and organ failures which 60 or 100 years ago would have killed patients from childhood through to middle age, are now treatable and can be cured by medication or surgery. But the brain (which is not just the “mother board” of our bodies but also the essence of our personality and who we are) is the most challenging, intricate and complex organ, and still (despite advances, research and improving surgical procedures) the least understood. We can transplant hearts, medicate once-killer diseases, inoculate against contagious illness and take 20 years off our appearance with plastic surgery, but rejuvenating the brain is, as yet, beyond us.
There is no dementia “epidemic” spreading through the population. The simple fact is that the longer we live, the higher the chances of dementia. For some that may mean diagnosis in our seventies and for others – like my own mother – it could be the nineties. Some may escape it all together.
There are too many aspects of dementia to cover here, but one crucial consideration is carers or next of kin. It’s often assumed these will be sons or daughters, but increasing longevity now means it is almost as likely to be a spouse. It is normal for adult children to expect to care for and outlive their parents. But for a husband or wife who is also elderly, to face that stress, along with witnessing the gradual “disappearance” of personality and memory of their lifelong partner and equal, can be devastating.
The increasing level of physical care required (as the brain controls all bodily movements and functions as well as mental abilities) means residential nursing care is eventually likely in the majority of cases. Today the standards of nursing homes specialising in dementia are generally high with entertainment, activities, stimulation and the best possible quality of life among the most important priorities. But with that comes a huge social and economic challenge in providing sufficient homes, nurses and care staff, activity specialists, and maintaining standards.
Dementia is often described as “the cruellest disease”. And for relatives, it may well be. But there is another, more positive, way to look at it. The early stages, when the patient realises their confusion, is frightened about what is happening to them and becomes agitated, is arguably the worst part of the condition. But as it progresses, and awareness decreases along with developing cognitive impairment, fear often subsides.
My mother for example, a cardio thoracic nurse who worked up until her seventies, is now unaware and unperturbed that she is completely immobile, doubly incontinent and has to be intimately cleaned by others. She seems to have lost most of her pain senses, even when her paper thin skin breaks creating what is known as a “flap” and is treated and heals. Her lack of comprehension or recognition means she will no longer experience sadness as we know it, understand when her loved ones have died for example, and nor is she likely to have any concept of her own death. She enjoys her food, laughs and giggles, and though she has lost the power of speech she can still make noises indicating basic pleasure or annoyance.
She is treated with respect and dignity and staff spend time with her to the extent that they can “read” her needs and expressions. They ensure she is smartly dressed, has her hair done once a week and has regular manicures as any lady of her age would wish – if she still had the mental capacity to do so.
But for her, life has gone full circle……entering the world as a baby, growing and learning, being a mother, achieving and working for over 50 years, enjoying retirement, then gradually “unlearning” and returning to where she started, being fed, cared for and changed. Would I wish she still had full mental awareness of her physical situation at the age of 98? No, of course not. There can be a gentle side to dementia, for the patient, if not always recognised by their friends and relatives.
Research goes on into finding ways of fending off dementia, slowing its progress and possibly eventually, finding a cure. The moral question – which is rarely discussed – is do we really want a cure?
There can be no argument against working towards prevention of early onset Alzheimer’s or dementia which strikes people in their prime.
But the reality, especially for the elderly, is that no-one is immortal. It would be wonderful to think we could all live for a century, remaining intellectually and mentally sharp as a tack, and die painlessly and suddenly in our sleep. A lucky few do just that.
For my mother, I see dementia as Nature’s kindness, protecting her from the pain, sadness, fear, disappointment, regrets, insecurity, embarrassments, frustrations, mental and physical disabilities of old age, the pointless longings for yesterday, recognising the futility of her current state, and having to face the reality of her total dependence on others and approaching death.
Yes, it can be hard to see the positives of dementia. However, the alternative could be even worse.