Dementia can be a very lonely experience not only for the person living with it but for those around them, writes Derek Fisher.
This became apparent to me when I realised that my father had early signs of Alzheimer’s and I did not know then what I know now. This is a huge regret to me and always will be. He must have been crying out for help and I simply had no idea what was going on.
As time passed and my father sadly passed away I got involved with dementia through work and on many occasions, I have seen my father’s story unfold in front of me in the guise of others. I vowed to help as many people as possible in any which way possible. No one should do this journey alone.
In my 16 years of working in dementia and with those living with this disease I have learnt one thing, that no two people with dementia are the same. We are all different and we all have a story to tell. People with dementia may have the disease at varying degrees but underneath it all they are still people with a history and a life and they have a voice. This voice must be heard and considered in all decisions made about them. My good friend Chris Roberts (who has early onset vascular dementia and Alzheimer’s) and always says ‘nothing about us without us ‘. It’s all about person centred care.
Walk a mile in their shoes
I always say to anyone involved in the care industry that It’s so important to put yourself in the other person’s shoes and treat them as you would like to be treated. Respect, dignity and time are three vital components in care and very much so in dementia care.
All too sadly I must say that there needs to be a raising of awareness re dementia in this country and even worldwide. There still exists a huge amount of people who just don’t understand the disease and how the person living with it feels. There is so much stigma attached and the media don’t help in any positive way. All too often I read false headlines in the press written to sensationalise and headline grab. Sadly, Joe Public buys these stories to the detriment of the person with dementia.
It’s not all about that person with the disease but it has huge knock on effects on families also. On numerous occasions I hear that one member of a family has given up work to look after a close loved one with dementia. It must be said that at times it is left to one sibling to do all the care. Very hard on one person’s shoulder’s. So, it’s back to my previous comment of no one should do this journey alone.
There seems to be a lack of general understanding of dementia among some GPs who at times consider the signs to be part of the ageing process. Wrong. It is not like that at all. Dementia can strike at any age and indeed there are some 40,000 people in the UK with dementia under the age of 65. Work needs to be done with GPs. There are some great people out there doing sterling work in this direction and full credit should be given to these hardy souls.
I would implore anyone who has a concern about a loved one to first obtain a urine sample and get it analysed asap. A urine infection can play havoc with one’s mind. If the result is positive then simple anti biotics can and should be prescribed. In the event of the result being otherwise then professional help must be sought via a memory clinic and or a dementia specialist. The quicker one gets help the easier the journey will be, there is no shame in seeking help and admitting you cannot go it alone. It is in fact a brave decision to make.
Another lesson I have learned over the years is to always talk about your problems to anyone and everyone. Dementia can’t and must not be swept under the carpet and become taboo and the more we are open and honest about it the better for all concerned. I have recently spoke at length to a family member whose husband had dementia. The conversation flowed for ages and she was relieved to be able to talk about it. Very sadly for me this opportunity did not exist for me many years ago, but I hope that others will find comfort from talking to others.
About the author
Derek Fisher is a regular contributor to Dementia Help’s website and social media channels. Follow him @derekfisher2907