I was recently offered a spotlight to present my business, ‘The Memory Shed’ at a local networking group I attend, in Buckingham, That Networking. I shared how I came to write my father’s life story and that reading the notes of his childhood to him in hospital became a great source of comfort when he developed a rapidly progressive form of dementia. Taking him back to his most early formed memories seem to miraculously flick his disposition from one of agitation to one of contentment. It was the seed of the idea for The Memory Shed.
On hearing my story, Samantha Duffin, Business Development Manager at the Milton Keynes branch of National Carers agency @Home Instead invited me to give a talk to two groups of carers at a recent training day. I was delighted to be invited. In the last three months of my dad’s life, carers became his lifeline. As a family, we were deeply touched by the love, care, and dignity they showed towards him. I was similarly struck when talking to many of the carers at Home Instead. Their kindness, warmth, and passion for supporting the elderly and compromised, many of whom do suffer from dementia, was palpable.
Home Instead had organised for the carers to experience an interactive, dementia simulator session on @The Virtual Dementia Tour Bus, managed by @Training2Care. I was grateful to join them. The tour which operates nationwide offers people with a healthy brain to experience what it feels like to live with dementia. Without sharing too much insight on what the experience entailed (I do not wish to spoil it for others), it was uncomfortable, exhausting but above all, frightening. The bus cleverly uses technology to recreate the effects of the illness, shining a light on how people living with dementia experience everyday life.
The real value came from the discussion that was had back in the classroom afterwards, facilitated by Peter Ronan from Training2Care. We talked about:
- The physical discomfort we felt. Many dementia patients suffer from peripheral neuropathy – it can feel as though you are permanently walking with pins and needles in your feet. Dementia patients often benefit from wearing soft footwear such as trainers or slippers.
- Dementia can affect people’s ability to grip. Cups and cutlery with adapted handles can considerably improve how people cope with simple day-to-day tasks such as feeding themselves.
- Hearing can be distorted. Many with dementia can lose the ability to filter out background sounds, resulting in a constant blaring noise. We were told this may explain why dementia patients find it troublesome to wear their hearing aids.
- Due to the issues with sound and hearing, dementia sufferers often struggle to hear commands or instructions. It was suggested carers should gently touch patients on the arm before talking to them – an empathetic prompt that they may need to respond in some way.
- Vision can be affected by macular degeneration or tunnel vision. Patterned rugs and carpets can cause significant confusion as sufferers struggle to differentiate between objects and patterns on the floor. A blue rug might look like water; a red rug might appear to be a hole in the ground. Neutral, earthy colours are far more practical.
- Facial recognition is a particular challenge – this is why it is so important for carers and family members to always remember to introduce themselves, even though they may pay a visit multiple times a day.
- Visual hallucinations are common in dementia – people often see things that are not there which can include animals or flashing lights. Furthermore, some lose the ability to see in 3D.
- Even the colour of plates and cups can impact how a dementia sufferer responds at mealtimes. Mashed potato on a white plate can be invisible. Blue plates have been shown to increase food consumption by up to 15% whilst red plates have increased it by 25%. Interestingly, red is the first colour we learn but the last colour we forget. It was also fascinating to learn that dementia patients often don’t see colourless liquid like water – however adding some coloured squash can markedly increase fluid intake.
- Families often like to put up photographs as a way of bringing comfort to family members with dementia. We learned that for many, being presented with a sea of faces can be intimidating – we cannot always assume that familiar faces are recognised. That said, old photos can be helpful. A dementia patient may more easily recognise themselves at the age of twenty, than ninety.
This is just a brief snapshot of some of the fascinating learnings that came from the session. Importantly we learned that dementia sufferers are often only exhibit challenging or aggressive behaviour because they have an unmet need. Family members and carers cannot change how the person is, but they can change the environment that the person lives in – helping to make it less hostile and unfamiliar. Maya Angelou’s famous quote resonates significantly in this respect: ‘At the end of the day people won’t remember what you said or did, they will remember how you feel.’
Following on from the Dementia bus session, I talked about my own experience of witnessing my dad’s cruel demise from dementia. But also, how tapping into his longer-term memory became a source of comfort for him. Reframing life story work within the care setting, I shared how helpful it can be as a way of communicating with a person about their life – also in finding out what is important to a person in terms of their memories, experiences, life events, values, and beliefs. Capturing this information can often support in the ongoing communication and care of that person. It can facilitate person-centred care and enrich the relationship between carer and patient. We discussed ways that the carers could support their patients in this space. It is not always about writing a book. Anything that triggers memories can support life story work – a collage or memory board, videos from family and friends talking about a special memory and a collection of music can be hugely evocative in stimulating memories.
Sadly, an increasing number of us will be touched by dementia in our lifetimes. 1 in 11 people over the age of 65 have dementia in the UK with over 1 million expected to be suffering from it in the UK by 2030. Whilst one hopes that medical research will continue to make advances in how the condition is controlled, understanding, and improving the environment that current dementia patients exist in can make a positive difference to both patient, family member and carer. I hope to continue to collaborate with Home Instead in this vitally important space.
If you are interested in hearing more about the services that Home Instead offer to the eldery and dementia patients, please visit: Award Winning Home Care | Home Instead
You can also find out more about The Dementia Bus at: Virtual Dementia Tour Mobile – Training 2 Care UK Ltd
