Before you continue reading, take a moment to consider how you would respond to the following four questions…
Dementia: What does this word mean to you?
Who is affected by dementia?
Does a diagnosis of Dementia mean your life has ended?
Are you part of a Dementia Journey?
Like many people in the U.K, I myself have lived with dementia and experienced its effect, not through a diagnosis but as a family member when my grandma was diagnosed with Alzheimer’s. This is going back several years now and at the time dementia to me was a condition the elderly got, it was part of getting old and the only help available to people with dementia was support of their families and full time care that was mostly dealing with the physical needs of the person. Thinking back now it is sad that there have been many misconceptions over the years regarding Dementia as I believe I was not the only one who believed the above.
Meet Joan the bear, a very special bear who gave comfort to my Grandma in her most vulnerable times of her dementia journey. Sadly, Joan the bear has been neglected in recent months following a recent house move and found herself in the attic until the other night, ironically it was the night the final part of the amazing documentary of ‘#OurDementiaChoir’ aired on TV.
Upon finding Joan it brought back memories of how vulnerable, a strong woman who was always immaculate (especially took pride in her nails and hands) became a shell of herself. Yet, no matter how distant she became you could always tell by the way she looked at her hands, then I might add, looked at mine in horror at times (yes, those days I was still a nail biter) her values on hand care still mattered to her. The beam on her face when a family member brought in the manicure set and polish and did her nails was special to see.
Sadly, during the time of my Grandma’s diagnosis there was still little knowledge of how dementia affects the emotional wellbeing on a person, and it was just seen as a part of aging. Sadly, like Joan the Bear, people with dementia at the time my grandma had it, were forgotten about, and were often left to exist rather than live life with their dementia. I often wonder what might have been her dementia journey if she was a few generations behind.
My understanding of Dementia has changed since then, I now know that a diagnosis of Dementia does not mean sudden end of life. It is not just a condition in which elderly people have and there is not just a one size fits all dementia, like cancer there are many types of dementia, (around 100 of them) all having their unique ways of affecting brain functions.
You see Dementia is less becoming a word of stigma. It is being openly discussed in communities and shown on TV. We have special awareness weeks within the public health calendar with #DementiaActionWeek being in May 20th-24th
There are amazing charities out there such as Alzheimer’s Society and Dementia UK providing dementia friends training, support, information, helplines and specialist dementia nurses known as Admiral nurses assisting the families and the individuals with dementia.
The dementia choir programme brought to me a better understanding of how people begin to live with dementia no matter what their age. The strength that those amazing individuals had to help research find a cure or to gain better understanding on how holistic treatment can improve their condition (in particularly music influencing their mood and it stimulate their brain). They showed that Dementia will not define them, even though they were affected by it, each day they were determined to help each other overcome their weaknesses, encouraging each other through the hard times and celebrating each other’s achievements no matter how small they maybe.
Not everyone needs physical care but need people who understand Dementia itself as it is the emotions, frustrations and worries that need addressing first, yes at the later stages the personal care will be needed but it is important we let people live with Dementia first. Who knows how long each person’s journey through dementia will take but like several participants in that documentary stated they want to live for the now, make memories while they can, enjoy the time with their families and society needs to keep an open mind and provide the assistance for such people to achieve their goals in life.
I have had the privileged through my work to attend a training course on Alcohol related dementia, a course I would state is vital to substance misuse service staff to go on as long-term damage can be prevented if the correct treatment is given in time.
Here at White Ribbon Association we do have a ‘Health information Board’ that focuses on Dementia and support available on our ‘Alcohol related brain damage’ display
We can also include activities relating to dementia on our ‘Mental Health’ Interactive Health Stand which will also have our display focusing on ‘Stress and managing stress’ available.
If you would like to know more about our displays and Health stands please email us at firstname.lastname@example.org or call 0121 744 3214.