WHAT OUR RESIDENTS HAVE TAUGHT US... 

OCTOBER / NOVEMBER 2019

We understand that families sometimes become carers suddenly, and are often in shock and overwhelmed with the diagnosis of dementia. Most families have very little experience dealing with the challenges of this dementia journey, in particular, the changes of the person with dementia. You do the best you can with the information you have at the time. We are hoping that by sharing our knowledge and experience, we will add to your tool box as you face more challenges. We urge you to take care of yourself and to please find a support system for yourself as soon as possible. 

We meet and work with a lot of family carers who are always very grateful for the information we pass along. What pulls most at our heartstrings is the fact that so many family members feel deep regret, guilt and sadness; they wish that they had somehow known or been given all the relevant information about dementia at the time of their loved one’s diagnosis. It seems that everyone in the dementia world experiences regret at not knowing sooner - including us! 

We try to do the best we can with the knowledge we have at the time. We support Alzheimer’s Research and Alzheimer’s Society UK, who are constantly carrying out research to better understand dementia. We are also always looking for best practices and leading evidence-based research. When we come across sources that point to the same direction as our own observations and experiences, then we have confidence to benefit from cutting edge research and try new interventions at the Devonshire. We are lucky to have the support of our Residents, their Advocates and families to do this. University of West London also conducts research at the Devonshire, to better understand the effects of dementia.

We could write several books and still not have covered the subject fully. Every case of dementia is different. Our staff are especially trained to look for signs and clues in each Resident’s behaviour, to understand how best to help them. Here are some of our learnings and a few more tips…that hopefully will lead to a few more AHA moments.

• 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.
• We know generally that dementia affects vision, but a person with dementia can have perfect eyesight and still not understand what they are seeing or whom they are seeing because the brain that processes what they see has deteriorated. 
• A lot of research has been done on Alzheimer’s, which is the most prevalent form of dementia. About 60-70% of cases of dementia are Alzheimer’s cases. Teepa Snow of Positive Approach to Care has spent 40 years working with people who have dementia. She shared the following research (Trick, G.L.; Trick, L.R.; Morris, P. & Wolf, M. 1995). During the earlier stages of Alzheimer’s peripheral vision can be affected. The 180-degree vision changes suddenly to ‘scuba vision’ and declines further to ‘binocular vision’. So if we imagine what we see when wearing a scuba diving mask and then try walking around with binoculars on, this would give us a sense of how the vision of a person with Alzheimer’s changes. It is essential to remember that their depth perception declines. To better understand this, try making a fist with your right hand and raising it to your right eye. Look through your right eye with your left eye closed. Now try picking something up off the floor with your new ‘mono’ vision. You will probably loose your balance and topple over.

Once we started understanding how vision changes, it was no longer surprising that some people living with dementia, when seated at a dining table, reach over to grab someone else’s food as they cannot see their own plate that is placed right in front of them! Then there are the challenges of social vision and task vision. This means that the person can either see straight ahead to socialise or look down at their plate to complete the task of eating. This is why our attempts at making every meal a social occasion don’t work for everyone! We do try and group our Residents together for their meals. On some days we get it right, or at least better than on other days, because every Resident has good days and not so good days. A Resident who we had the privilege to care for thirty years ago, Charlotte, once said “the fog is thicker on some days and then I really don’t know!"

We discovered that white-coloured food, such as mashed potatoes, rice or cauliflower ‘disappears’ if served on a white plate. In such a case solid coloured plates are a better option. We changed our crockery to blue six years ago, since there are very few blue foods that we serve - with the exception of blueberries and blue corn chips. We recently learned about the Red Plate study by Boston University bio psychologist Alice Cronin Golomb who believes that visual contrast increases food and liquid intake. So we are now going to try red plates. Vanessa and Smith are really excited to see if we can stimulate appetite for those Residents who need to consume more calories. Table tops also should be in a contrasting colour to floors and chair seats.

Toned flooring matters to someone with depth perception issues. Every week, when doing dementia mapping on the floor, we would notice a Resident, Raymond, stop dead in our lounge where the carpet met the non-slip flooring, even though there was no obstruction. Ray would then lift his leg as if he were taking a huge step. He would lose his balance and nearly topple over. Our staff were keeping constant vigilance on him. We wondered why he would behave in this way, never making the connection with his eyesight, because the optician had come in and tested Ray to find that he had perfect 2020 vision for his age – a little discolouration, a few floaters, cloudy due to cataracts but nothing to explain how he was losing depth perception. So our investigation began. Unfortunately there is still very little research available on various aspects of dementia. Nevertheless, we persisted and thanks to our association with the University of Sterling Edinburgh Dementia Design School we learned about the effects of depth perception loss and how to check for tonal depth. By lucky coincidence our flooring and the carpet were the same colour, but it was a metallic strip that was causing the depth perception issue for Raymond.

We learned that black areas of floors are interpreted as big black holes whereas shiny floors look like they’re wet - it is truly fascinating research. Primary colours, that are the first we learn to perceive as children, seem to be the last to go. We are still looking for research on the colours.

Another Resident who taught us a lot was Dorothy. One staff member noticed that Dorothy always got lost on her way to her room, even though she was capable of recognising herself in a photo and read her name (apparently reading can still prevail even when language might have been lost, although we are not sure if comprehension still exists). We watched Dorothy and noticed that due to the fact that she walked with a Zimmer frame, her line of vision was much lower than the door sign stating ‘DOROTHY’ and her photo, so she would walk right past her room! After we realised this, we started hanging all the pictures lower. Making these kinds of changes has been a gradual process, but a very important one, as it enables Residents to retain their independence for as long as possible.

The ‘elephant in the room’ is often the unasked question: will I get dementia?

Luckily there is more research and knowledge available daily as neuroscientists study the complex brain. At a recent Alzheimer’s conference in London, Professor Bart De Strooper, a world-renowned dementia expert, made an analogy. He said that if every person in the world (currently 7.5 billion) each had a computer and they were all connected and working together, that would equate to less than a tenth of what goes on inside a brain!

We have always been told that during a human lifetime we only ever use part of our brain and that our brains are resilient. We have read research that shows on-going learning seems to create new rewiring and brain cells adapt and find new pathways and connections.

A fascinating study started in 1986 by Dr David Snowdon involved a unique population of 678 Catholic sisters ranging in age from 74 to 107 years. It showed us the power of the brain to rewire. The nuns agreed to have brain autopsies conducted at the time of their death to examine and confirm plaques of Alzheimer’s. Although their brain scans showed many plaques the sisters did not show any signs of Alzheimer’s. This is attributed to their commitment to keep learning and to leading a healthier lifestyle. Certainly something for us all to think about!

Here are some suggestions on how to create new neuropathways in your brain: 

• Learn a new language 
• Change your routine 
• Learn a new skill, for example how to play bridge
• Take up a new hobby or sport

To switch to a healthier lifestyle, try the following:

• Stop smoking 
• Eat a healthier diet low in saturated fats and salt 
• Exercise for at least 30 minutes a day
• Drink alcohol in moderation 
• Have blood pressure, blood sugar and cholesterol checked regularly 
• Remain socially and intellectually active 

Every one of us falls off the bandwagon once in a while - the trick is to brush yourself off and keep going!

Carers of loved ones at home also need to practice better self-care. They need to build a support network of family, friends and professionals while also learning how to ask for help. Sometimes people don’t know how they can help you. Even spending a few hours with the person you are caring for, while you go out or rest, would be a treat for you. Remember you cannot be of any help to anyone if you yourself are not well.

The views presented in this newsletter article are based on our own experiences, observations, learnings, dementia mapping and clinical research from around the world. They are all the opinions of the author, based on over 31 years of experience working with people living with dementia. Annar Mangalji has been awarded an Honorary Doctorate from the University of West London for her work with dementia.

We hope you have found this article helpful. If you have any questions, please send an email to annar@devonshiredementiacare.com