WORLD ALZHEIMER’S DAY DEMENTIA AWARENESS
By understanding what happens when someone is diagnosed with dementia, we can prepare ourselves and build our support system as well as our toolbox to cope with the inevitable changes that the progression of dementia brings.
Last Saturday, on 21 September 2019, to mark World Alzheimer’s Day, the Devonshire Dementia Care Home and Day Centre organised a free 3-hour workshop for members of the community to raise awareness about dementia. The workshop included a virtual dementia tour by Experience Training Ltd, using props patented by P.K. Beville, founder of Second Wind Dreams, specially designed to replicate what a person with mid stage Alzheimer’s experiences.
The day started with a group of twelve family members/carers participating in the 15-minute virtual experience and learning about the progression of dementia. The focus of the morning was how to deal with the changes. The Devonshire staff shared a wide range of useful information that they have learned over 31 years of caring for people living with dementia and there were many ‘Aha moments’! There were three sessions in all, followed by a wonderful afternoon high tea.
We learned that:
- There is no cure for dementia yet.
- Today in the UK there are over 850,000 people that have been diagnosed and by 2025 there will be over a million.
- The financial cost of dementia is over £26 billion a year in the UK and yet just £82.5M goes to dementia research while cancer costs £16.4 billion and £262.4M goes to cancer research.
- The Borough of Kingston has about 2000 people diagnosed with dementia.
- This is the human rights issue of our time.
- The rate of progression depends on the person’s physical make up, their emotional resilience and the support that is available to them.
- Alzheimer’s (simply put - plaques and tangles that mysteriously form and suffocate brain cells), being the most common form of dementia (62%), first seems to affect the hippocampus. This is where memory, attention and logical thinking are stored. The disease then moves to the senses.
Devonshire staff made it simple and easy to understand. We learnt what actually happens and experienced many ‘AHA’ moments. For example, we knew generally that Alzheimer’s affects vision, but heard that a person with dementia can have perfect eyesight but not comprehend what they are seeing, because their processing is gone. Even at the earlier stages of Alzheimer’s, peripheral vision can be affected. The 180-degree vision changes suddenly to ‘scuba vision’ (imagine wearing a scuba diving mask!) and vision then changes to ‘binocular vision’. – Try walking around with binoculars – it’s no wonder some people living with dementia seated at a dining table reach over to grab someone else’s food – they cannot see their own plate placed right in front of them! White-coloured food, such as mashed potatoes, rice, cauliflower, ‘disappears’ if served on a white plate. In such a case plain but coloured plates are a better option. During the three-hour session we also learned that depth perception is altered and to illustrate this better attendees tried to pick something up off the floor with ‘mono’ vision. It made a family member realise why Dad used to just stop and stand in one place when carpet colours changed. He would not walk into the kitchen unless they held his hand. She now understands it was probably because of the black rug, which he saw as a big black hole. She wished she had known then - she simply would have removed the rug!
The props we used also magnified sound and some attendees described feeling they were going crazy!!
Many family members felt regret and wished they had all the information presented during our workshop sooner. It seems that everyone in the dementia world experiences regret at ‘not knowing sooner’. Luckily there is more research and knowledge available daily and the Devonshire tries to keep up with the latest research and assimilate it into their care and practice.
By understanding what happens, we can make changes and realise that our loved one is not being ‘difficult’. Their brain is dying at different rates and they are doing the best that they possibly can in their particular situation.
The Devonshire staff stressed how important it is to build a support network and ask friends and family for help.
Attendees on the day were Residents of the Kingston community - carers living with a person who has dementia, families of Residents living at the Devonshire, families of Day Guests who attend the Devonshire Day Centre, as well as members of the free Devonshire Wednesday Coffee Morning and Singing Group. RBK Counsellor Leslie Heap was also in attendance. Everyone thought it was a very helpful experience to really be able to understand what a person living with dementia experiences and to talk about what they can do. A few family members were overwhelmed and felt supported within the group.
“We are all struggling and it is nice to know we are not alone.”
“Hearing what other family members say about how they cope was helpful.”
“I wish I had known this when Dad was first diagnosed. He changed so quickly, and I just could not
understand. I felt like he was a different person.”
“My husband is no longer the man I married. I feel like I am looking after a child. The responsibility is overwhelming. The kids don’t have time because they are busy working and looking after the grandkids.”
“The Devonshire Singing Group is a great opportunity for an outing, and we have a safe, dementia friendly place to go to and actually have some fun. I haven’t left him on his own yet but think I need to, so that I can have a couple of hours to myself.”
“I’m hoping David will go to the Day Centre after the singing group for the rest of the afternoon.”
The Devonshire wants carers to know that they are not alone. An attendee asked the Care Manager why they were doing this - giving away their secret sauce recipe for free - Vanessa said: “We have learned so much from our Residents over the past thirty one years and want to share this knowledge with any family caring for a loved one with dementia. The diagnosis is overwhelming. Families often become carers overnight without any support or preparation. The disease creates so many changes and carers tell us they wish they had this information before. World Alzheimer’s Day seems like a perfect opportunity to reach out!”
Everyone is invited to attend the Devonshire’s free Wednesday Coffee Morning and Singing Group. Singing is like a super drug. It releases endorphins and oxytocin to the brain helping make the person healthier and happier and have a better day!