'Mum's Alzheimer's was a blow, but there have been positives too - we are now closer than ever'
Strangford estate agent Michael Dunn, whose mum Betty has had to move into a nursing home due to her dementia, tells Stephanie Bell how the right approach following diagnosis can make a real difference to quality of life.
In what is such a tragic disease, it was good to have some positive news about dementia with a new scientific report revealing that cases have in fact been dropping for the past 20 years, despite predictions that numbers would increase.
A team from three UK universities reported that cases were down by a fifth in the past two decades, with 40,000 fewer than previously predicted.
The findings suggest that in the UK there are just under 210,000 new cases a year - 74,000 men and 135,000 women - compared to an anticipated 250,000, based on previous levels.
It is thought that lifestyle and education changes have played a role in reducing the figures.
This is a potentially significant finding, as it suggests that it is possible to take preventative action, such as stopping smoking and reducing cholesterol, to help avoid the condition.
Scientists say the report clearly links physical health with brain health.
It is news that has been welcomed by dementia charities and support groups, as well as the carers and relatives of patients who currently live with the disease.
Local businessman Michael Dunn, who runs his own company, Michael Dunn Property Consultancy in Strangford, has been caring for his mum Betty (86) since her diagnosis four and a half years ago.
Michael (49) has been a passionate supporter of local dementia charities, giving talks and, in particular, trying to promote the importance of early diagnosis.
He feels that in his mum's case she was fortunate because, having had private health insurance, she was tested and diagnosed within just two weeks of being referred to a consultant by her GP.
While it has been heartbreaking for him to watch his mum gradually succumb to the disease over the years, Michael is remarkably positive in his attitude and in how he has learnt to cope.
In recent months his mum's condition has deteriorated to such an extent that she has had to move into a nursing home for round-the-clock care for her own safety.
Yet Michael looks forward at the end of a long working day to visiting his mum and enjoying quality time together.
His mum, a retired primary school teacher, enjoyed a busy life before her diagnosis, playing tennis into her late 70s and volunteering in her local community of Strangford.
Michael has two brothers who both live in England so he was happy to take on the care of his mum along with his father Ronnie (86), a retired managing director of a construction company.
"Mum was always very busy and fit and did a lot of voluntary work and caring for other people," he says.
"For a few months before her diagnosis she wasn't feeling herself and was starting to forget things and feel confused.
"She would have forgotten names and what she had done in the short term, although her long term memory was fine. She would have found day-to-day things like what to eat difficult and when she went to her GP it was suggested that it could be dementia.
"We were lucky in some ways; because dad had private health insurance she was quickly seen and diagnosed and I know other people have to wait months for that to happen.
"It was only two weeks, but it was a very scary period. It is an anxious time for the person and the carer.
"A lot of what you hear about dementia is very negative and concentrated on the final stages and you do fear for the future."
Michael did his own research and contacted the Alzheimer's Society, where he received a lot of much-needed support.His mum was very positive about her diagnosis - and mother and son decided from the start that they would tackle it head on.
For Michael, communication with his mum was vital and he knew that it was important that she tell him everything she was feeling. This enabled him to arrange any extra support she may have needed.
Asking his mum to be open with him unexpectedly led to a wonderful new bond between mother and son, who were always close, but who have enjoyed an even deeper relationship over the past four years.
Michael says: "From the very start I spoke openly with my mum and told her we would go through the journey together.
"When I said I wanted her to tell me everything she was feeling, she joked that it had to work both ways - and that she wanted to hear everything going on in my life. As a result we developed this very open and honest relationship in which we discussed everything and it made us even closer."
It has been tough though, watching his mum gradually deteriorate and recently when she started to fall frequently it became apparent that she needed round-the-clock nursing care for her own safety.
Now, his mum has settled into a nursing home and Michael looks forward to the precious time he spends with her every day.
"She is being well cared for and she does keep very positive and never complains. Every case is different and there are so many different forms of dementia," he says. "I've seen mum gradually go downhill and for her it can be very frustrating at times. She knows what she wants to say, but she can't say it.
"She is really good on a one-to-one basis, but can't cope with groups of people.
"She loves you to sit opposite her and hold her hand and talk directly to her.
"It is very rewarding spending time with her, because she is so selfless. Even though she forgets things, she is creating new memories for me.
"She is so cheerful and positive that at the end of a hard day going to see mum really lifts my spirits.
"We have fun together and she loves to talk about her childhood and our childhood growing up.
"She is someone who has given me unconditional love throughout my life and even now to hear those words 'I love you' from your mum, no matter what age you are, there really is nothing like that."
Michael has worked with the Alzheimer's Society, giving talks about his own experience and what it is like to be a carer.
And he is an advocate on raising awareness, especially on symptoms and the importance of early diagnosis.
"Early diagnosis can really help people, as they can be given medication to control it and slow things down," he says.
"A lot of people find it difficult to go to the doctor and it is so important that they do so as soon as possible. There is still a stigma attached to it and people are quite often left to deal with it on their own.
"I think we are slowly developing a dementia-friendly society. It is not just older people who are affected, people are now being diagnosed in their 40s and 50s. And it happens to all sorts of people, so we need more awareness.
"We need people like the coffee shop staff, the bus driver or the shop assistants to think about that person they are dealing with, who is not reacting the same as others. If they can just stop and think that maybe they are coping with an illness, it could make a difference. We need training in the workplace and we just need more understanding and support."
Michael welcomed the new research which showed cases are dropping and said that any fall in the numbers is encouraging.
It isn't just Michael's positive attitude that has been such a benefit during his mum's illness, but her own approach to coping has helped both of them to enjoy quality time and build special memories.
"Mum has always been quite open and direct about it and will just tell people she has dementia. She has tackled it head-on, which is very brave," says Michael.
"People do hide behind it, but she talks about it and, yes she does get frustrated, as there are lots of things she can't do - but there are also lots of thing we can do.
"She loves nature and going out for drives and she loves music and listening to old songs that she would have grown up with," he says. "It is a horrible illness, but if you dwell on that you would get really down and I think you just have to deal with it on a day-to-day basis."
Michael is very aware of what the future could hold and knows that the day may come when his mum no longer recognises him and that is something he naturally dreads.
"I don't dwell on the future. I don't have children, but that feeling I imagine a parent gets when they see their child's face light up is what I get when my mum's face lights up every time I visit her," he adds.
"She feels safe with me and the day that I walk in and her face doesn't light up will be very difficult. I am just giving her now what she has always given me."
Fighting back against cruel disease
- Listen to music: a song is evocative and those affected by dementia respond well to music. The well-loved tunes help them relax and recall cherished memories from their childhood and youth. The late neurologist Oliver Sacks said: “Music evokes emotion, and emotion can bring with it memory… it brings back the feeling of life when nothing else can.” By pairing music with every day activities, patients can develop a rhythm that helps them to the recall the memory of that activity, improving cognitive ability over time
- Make a memory box; a small box with a few keepsakes — everything from children’s photographs to a favourite scent, a colourful or tactile item, such as fabric from a favourite item of clothing or token which helps recall a special occasion provides conversation triggers for those suffering from Alzheimer’s and their visitors
- Art: creative projects such as painting can nurture a sense of accomplishment and purpose. They can provide the person with dementia — as well as care-givers — an opportunity for self-expression