Merle Weiner: ‘Opening my home to people with dementia makes my heart sing'
Three times a week, on Mondays, Wednesdays and Thursdays, I open my home to small groups of five people living with dementia early to moderate dementia. It's a different approach to dementia care; in the comfort of my home, nobody feels overwhelmed by a large group and it feels like a day and lunch with friends.
What happens in each group varies and is bespoke to the preferences and personalities of each group. Activities can include craft work, painting, baking, playing dominoes or Scrabble, or even sitting and having a long chat.
Quizzes are also very popular, especially ones where I ask questions about nursery rhymes (which everyone seems to remember) such as 'where was Humpty Dumpty sitting?' and we all merrily start reciting them together.
Each group, of four or five people, comes on the same day every week, so it's a familiar routine with the same faces in a comforting home environment. They know they will be spending time with friends and look forward to it.
It's not just about giving their families or carers a break (although I know that these six-hour windows of respite are hugely appreciated), it's about allowing people with the condition to still have a fulfilling social life.
I began working as a dementia host several years ago when I first heard about The Filo Project, an award-winning not-for-profit organisation providing small group care days for people living with early to moderate dementia. It's like a home from home experience.
My passion for working in the aged care field goes back 20 years, when I obtained my Aged Care diploma in Australia, after leaving South Africa in 2005.
I'd settled in England when my own mother was diagnosed with Alzheimer's at the age of 69. The changes in her personality crept in slowly: initially she developed OCD and would spend hours washing her hands obsessively, fretting about whether they were clean.
She was living with my sister at the time, but when my once gentle and sweet-natured mum became violent and threatening towards my sister's young children, heartbreakingly we knew she needed to go into a home.
I would call each month from the other side of the world, and while she'd lost the ability to talk by then, the care home workers described how her whole face lit up as they held the phone to her ear and I regaled her with my news. I liked thinking it was bringing some comfort to her.
My beautiful mum lived a long time with the disease – 21 years – so I know how devastating Alzheimer's can be.
I joined The Filo Project to try and make a positive difference to people living with dementia, realising how isolated and lonely they felt.
Caring for people living with dementia is a privilege, and every person's dementia journey is different. It's important to know that the person living with dementia is still a living human being, although the brain is functioning differently. Everyone should feel comfortable and safe, amongst friends who love and care for each other.
Our clients vary in age – our oldest being 103, and the youngest is 68. The sad thing about dementia is that is doesn't discriminate when it comes to age.
In my groups, my clients are very happy to talk about the past. They enjoy reminiscing and going down memory lane together and I love listening to them. We enjoy celebrating special occasions. For VE Day, we decorated the lounge, made cupcakes with the Union Jack on and had a party.
Christmas time is also very special. Some clients even come to me on Christmas Day and we enjoy a traditional Christmas, where we do a lot of singing, play charades and finish the day by watching the King's speech.
We never put on the television (unless there's a royal wedding or coronation, which we will all be glued to) instead we play cards games or dominoes together, leaving all the cards open so we can talk about what to play next.
Our sessions are lively and filled with joy, and everyone adores my elderly spaniel, Chloe, who also acts as an unofficial therapy dog.
We form lasting friendships with each other and people's families too. I have one client who's been coming to me for five years now, every week. So it's devastating when the disease progresses beyond being moderate, as the scheme isn't suitable for those in the advanced stages of Alzheimer's. Hosts like myself aren't able to work with clients who are in a wheelchair or need personal care sadly. But we make the most of our time together.
Caring is a tough job for loved ones, so I see my role as supporting the whole family as much as my client. The more we talk about dementia, the more awareness we generate, and talking about dementia should start at a young age. Even chatting to young people about why they shouldn't be scared if Granny sometimes acts a little strangely. She's still their granny, it's just that her brain isn't functioning as it should.
I'm wearing my Forget Me Not Appeal badge this month in recognition of the outstanding work carried out by Alzheimer's Society, in memory of my beautiful mum, and for everyone who has lost a loved one to dementia.
If you enjoy the company of older people, are kind, gentle, with a sense of humour and keen to make a difference to someone who feels lonely and isolated, why not consider becoming a host for The Filo Project?
Experience isn't necessary; hosts work between the hours of 9am to 5pm on hosting days. It's essential to have a driver's licence and a five-door car, easy access into your home, with no more than a few steps, a downstairs toilet, and loose carpets or rugs need to be put away. A host's salary is very good, and we have ongoing training and support.
Having seen how much clients get from coming to my home I'd love more people to join us and for them to experience how life-enriching it can be. When I decided to open my home up to others, I had no idea how much it would open up my heart, too.
As told to Susanna Galton
Merle is supporting Alzheimer's Society's Forget Me Not Appeal, which funds life-changing support and groundbreaking research for the UK's biggest killer – dementia. Donate at alzheimers.org.uk/telegraph.
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