Talk to Dementia patients- Weinberg-Rauhes Haus

Since the age of 14 I have been regularly exposed to the beautiful and perilous aspects of growing old and taking care of the elderly. I started out by occasionally helping out in a dementia home in Hamburg with a family friend who works with therapy dogs for the elderly. Then right after graduating high school I worked in Alzheimer’s research at Roche for 9 months and through that I got to meet a lot of people very passionate about this, whilst also getting a good insight into the pharma side of things. Although our project is about ageing, I haven’t been thrown into the deep end of dementia research and care for a while. Precisely until I was back at the dementia home in Hamburg this past week, this time with the purpose of getting the opinions of the elderly about our project and their life in general. I got to speak to a few people individually and then also two groups of people, everyone with varying forms of dementia: from very light Alzheimer’s, which you wouldn't be able to tell, to the late stages, which are almost incomprehensible. Overall these experiences were enlightening, inspiring and motivating to do more research and help but simultaneously the potential realities of the future are distressing.

Below, is a summary of some of the stories of the people we got to speak to and the impressions and experiences we gained from the group sessions.

Monika

As I added some sugar and milk to Monikas tea her eyes lit up. She asked me what I was doing with my life and I proceeded to tell her I was studying in London. At this point her eyes grew even brighter as a grin crept across her face “I once went to a tea party in London!” she exclaimed happily as she stirred her tea. I inquired further about her time in London and she happily told me all about her holiday there back in the 60s and how she sees how things have changed now on the news. I told her a bit about my experience there, then followed up with a quick very simple explanation of why I was coming all the way to Hamburg from London and what our “ageing” project really tries to achieve. She was intrigued and told me that it is very nice “that such brilliant young people care about us old folks.”

Over the next 10 or so minutes she engulfed me with stories of her upbringing, her life in post-war Germany, her job as a Kindergarten teacher, her children and their children and how things changed after her husband died and she moved to a home for the elderly. She told me about how she used to always be independent and saw herself as a modern woman, taking fate into her own hands. Even at her nearly 90 years of age, the strength, resilience and power of her personality she was describing of her youth, shone through. It was difficult for me to change the topic from the positive and empowering aspects of her impressive life, to the potential hardships she may be facing now in a care home.

I am not sure whether it was sheer ignorance to assume that when you are put into a care facility, you are stripped of your independence and pride, or whether it was the fear of the unknown for my family or even myself in the distant future. Nevertheless I couldn't have been more wrong (or at least I was in Monikas case.) With the everlasting excitement in her eyes she told stories of her grandchildren visiting her and how she was proud to be known as “cool grandmother”, always having their backs and helping them out when they have made a small mess of a situation.

When I asked her how things had changed over the years she told me “I used to always be happy… But now the sad thoughts are catching up to me but I don't let anyone know. Especially not my grandchildren, to them I still am ‘happy grandma.’” When I tried to enquire further about her sad thoughts she blocked me off and told me it was no matter and that it was just a thing that happens when you get older. The momentary sadness in her eyes vanished in an instant as I saw the strong powerful woman inside trying not to let the distress get a hold of her.

Monika showed me that the character you have built up in your youth and earlier life does not need to change as you grow older. She was still the strong powerful woman that she had described to me and although she does require some assistance she does not seem at all dependent or unhappy about the help that is provided to guide her through her everyday life. Lastly she also opened my eyes to the fact that ageing is more than just a physical process but also a mental one that can affect your mental wellbeing, which may need to be taken into greater consideration when providing for the elderly.

Old people simulation suit

Our visit to the Dementia care home sparked lots of questions. Do we, as the young people of today’s society really understand what it is like to be an older person? We see elderly people all around us, we all empathise with our own grandparents, but can we really understand the struggles and difficulties of being old without living the life of an old person ourselves? The fact that Monika said that “such brilliant young people care about us old folks” has made us think more deeply about what we can do to understand this on a deeper level.

There have been a number of 'old people simulation suits' on TV down the years that simulate what it physically feels like to be an old person. These suits have been designed to make the person wearing the suit increase their empathy and understanding of what it’s like to be an older person.

NHS hospital staff have actually used this suit within the training programmes of their elderly healthcare professionals to give them a better insight to how their elderly and dementia patients feel when the try to perform basic tasks. Its currently used as a tool for optimising and improving healthcare. As demographics shift, we want to understand the needs of the ageing population better, to be able to create a future which is easier for the older people, more accessible and engaging. This tool will allow us to study and improve the life of tomorrow by allowing us to optimise and improving our novel therapies for the growing ageing population.

So we decided to go above and beyond and simulate physical changes of being old using our very own simulation suit. Our engineered suit has been designed by taking everyday items, to mimic certain physical characteristics of old age (a cheaper version of the real suit) In order to design this suit, we did a lot of research into what characteristics we could easily simulate. Professional simulation suits mimic the following characteristics:

1. Increased fatigue
2. Reduced flexibility in joints and muscles
3. Difficulty in vision and balance.
4. Restriction in movement

Therefore, our simulation suit was made by:

1. The addition of heavy weight: This can be used to mimic fatigue and arthritis
2. Straps around arms and legs and tight clothes: That would limit flexibility and ability to move fast
3. Glasses: Mimic debilitating eyesight as we age.
4. Headphones: Mimic reduced ability to hear well.

Our suit was then tested out by our team members who carried out the typical tasks that a UCL student would carry out. The members felt that it was hard to carry out everyday tasks and felt like they never thought that simple tasks would be so difficult without the suit. They also mentioned that they have an added respect for old age and their added determination to make BioSynthaAge the start of something real. Below is a video of the whole experiment and how each member felt before and after they wore the suit.

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Click on our gold human practices pages to find out how this experience influenced the design an execution of our project, right from the beginning.