Anne Hailes: Practical steps to support those with dementia - and their carers
"I keep a diary - I'm out for coffee tomorrow and then a barbecue on Friday." Linda Fisher's daughter Clayre butts in, "And we went glamping last weekend at the foot of the Mournes. We stayed in a log cabin with a hot tub and and a fire pit."
With a smile, her Mum adds: "Not bad for a woman of 77 with Alzheimer's."
Linda is a lady who faces her problems full on. She admits she was shocked when she was told this news but with medication and stimulation she is doing well.
She lives in a home in east Belfast which specialises in caring for those living with dementia and she and her daughter have adapted her rooms to make life easier - plenty of sudoku books, jigsaws, an iPad which tells her the day, date and time, and an electronic Alexa sits in the corner, ready to answer any question put to her.
With the help of the staff in her home she is able to fulfil a fairly active social lifestyle - she still drives her car, she visits the shops and meets up with friends.
With Clayre, Linda goes for organised walks, sometimes with another couple or with a small group. It was on one of these walks to CS Lewis Square that they met old neighbours for the first time in years.
The two daughters had been best friends at school and it was a real delight for the Thompsons to meet Emma Fisher and her father Roy.
When Linda's husband died just over a year ago, her mental situation worsened but this friendship with people she knew so well has cheered her.
"I'm a very cheerful person and it's lovely to walk together and then go to have tea with them," she says.
It's interesting that even a name from the past can trigger memories and stimulate a conversation therefore interaction with others is very important.
::What Is Dementia?
Dementia is an umbrella term for degenerative brain disease that includes Alzheimer's. It's estimated that in Northern Ireland 20,000 people are living with dementia and that number is projected to double by 2040.
It's extremely draining for family carers, both emotionally and physically. But there is help.
One point both Clayre and her mother emphasise is the vital work of the Dementia Friendly East Belfast. This is a hugely important and effective organisation that works between those living with dementia, their carers and the wider public.
Linda Armitage is co-chair with Eamon Quinn of Engage with Age, and she told me more about the project, including how Dementia Friendly East Belfast was established.
Thankfully in 2015 she attended a Belfast Trust meeting on the subject and having personal experience through members of her family, she decided to develop a strategy, called her own meeting and had an excellent response and, as she says, she harnessed the enthusiasm. And so Dementia Friendly East Belfast was launched in 2016.
"It's basically about being kind, knowing how to respond to the needs and raise awareness," she says.
"We are constantly reviewing what we offer. For instance, at the moment we are holding a Festival of Windows where 20 cafes, shops and libraries show art work by those living with the condition and so engage the interest of the public.
"We hold up to 50 events each month including walking tours and we have video training courses for families and organisations, for instance some sessions highlight a shopping trip.
"It's explained that a customer might become disorientated and need gentle help, that signage could be improved so it's easy to find the right department, give time and don't excite them by putting on pressure, try to understand reactions which might not be expected."
::First Hand Experiences
Allison Batchelor is a great spokeswoman for east Belfast and she has made short videos about her dementia experiences and points out the importance of cooperation between customer and staff, as well as their carers who are obviously under stress as well.
We hear how the organisation is as useful to family and friends as to their relative, just knowing where to turn for help, having someone to talk to who has gone through the same experience is a relief to someone who is struggling with trying to do the right thing during their worry and concern.
There are 35 hubs across east Belfast each offering information which will help organisations and support those living with the disease and now the pattern has spread further into Belfast and beyond each cooperating with the other and so a network is being built.
Linda Armitage invites the public to join the campaign to make east Belfast dementia-friendly.
"Just make contact," she says. "You could help make small changes that have a large impact for people with dementia. There are online training courses to join, resources and information available to pass on.
"This voluntary consortium is made up of groups and organisations, businesses and individuals and people living with dementia are actively involved in making decisions.
"Volunteers are always welcome and if you are interested get more information at 028 9073 5696."
::More To Come
There is another arm to the organisation - advice on making your home or office more accessible. I will be giving this information next week. It makes interesting reading and will be useful for all family members no matter their age or abilities.
There is a lot of information on the internet about Dementia Friendly East Belfast's activities - there's even a session of Tai Chi, gentle exercises which anyone can join in and enjoy.
:: Allison Batchelor's videos can be searched for on YouTube.
:: Further support is available from the Alzheimer's Society on 028 9038 7787 and Dementia NI on 028 9068 6768.