At the world’s first G8 dementia summit in June this year, David Cameron called dementia ‘one of the greatest enemies of humanity’. In Northern Ireland it is estimated that there are 19,000 people living with dementia and these levels are projected to rise to almost 60,000 by 2051, the fastest expected rate of increase in the UK (DHSSPS 2010).
An innovative new project, My Life My Way, supported by the Big Lottery Fund’s Reaching Out: Connecting Older People programme, and delivered by Age NI in the Belfast and Northern Health and Social Care Trust areas, aims to support older people who are living with dementia, and their carers, to literally live life their way. It’s a simple idea - Age NI matches older people with volunteers who can help them make little changes that often make a huge difference in their lives. Volunteers give a few hours each week, and it’s a really flexible role, built around the needs of the older person and their carers.
Linda Robinson, Age NI Chief Executive says, ‘A diagnosis of dementia is stressful for anyone especially if they are already feeling lonely and isolated. When older people go through care services, they often lose important social and emotional connections and their confidence is knocked.
'Our experience shows that older people with dementia are poorly supported as they face these major life changes. It’s vital that a person’s dignity and voice is at the centre of decision-making regarding what services he or she receives. That’s why our My Life My Way volunteers in the Belfast and Northern Trust areas are so important. They provide that little bit of help that allows a person to regain control and confidence. Sometimes it’s just a chat, a walk or maybe it’s doing something simple like making sure that important phone numbers are easily found. A small, positive change can have the most incredible impact on a person’s life.'
My Life My Way volunteers have lots of reasons for getting involved in the project.
John Nelson, 54 is from Newtownabbey and was inspired to be a My Life My Way volunteer having supported his dad for many years to deal with dementia
‘After my mother passed away 9 years ago, my father developed dementia soon after and I looked after him for the next 7 years in his own home. I feel that in a strange way I have had the experience of ‘living’ his disease for him, from early onset until he needed nursing care. I have been his advocate, fighting his corner when things went wrong, finding ways to manage his behaviour, and ways to keep him safe with new technology. I also support my ‘adopted’ aunt (a close family friend) to care for her sister who is also living with dementia.
My adopted aunt recently said that she would have been lost trying to come to terms with her sister’s dementia without my input. I could not have helped her without my experiences with my dad.
‘I found out about the My Life My Way project through the Age NI website. Having spent time overcoming the hurdles of the care system and accessing services, while caring for my dad and dealing with the trials and tribulations of this ever changing disease, I felt that I could put my understanding to good use. I felt that I could support other people living with dementia and help their carers who are in a similar situation to the one I was in. So, I downloaded the My Life My Way application forms, applied and then met Age NI’s project manager, Mandy.'
'After standard checks I attended a training session where I met like-minded volunteers, and shortly after I was matched up with my first client. It couldn’t have been easier to get involved. I get a lot of self satisfaction from volunteering as I enjoy helping others and it’s also an opportunity to meet new people and learn new skills. It does my heart good!’
Des Donnelly, 63 is from Finaghy and says that being a volunteer for the My Life My Way project is a rewarding and enriching experience.
‘I contacted Age NI after I read an article about the My Life My Way project, and I think at the time I was very conscious of lots of media discussion about the loneliness that many older people feel in today’s society. The Health Secretary, Jeremy Hunt, had given a speech in which he said that ‘each and every lonely person should have someone who could visit them and offer companionship'. I felt that I could do my bit for my local community.
'Age NI says that older people in Northern Ireland feel more isolated from their local communities than ever before, and that isolation is felt acutely by many people living with dementia. I see the volunteering I do as just being a good neighbour really. It takes up less than 2% of my week and you don’t need any particular skill or expertise, just some basic training, a little of your time and being yourself. I’m already thinking about donating more time to the charity.
'We are all growing older and I hope that there will always be volunteers to support projects like My Life My Way. When you volunteer, you don’t just give back, you get back too in so many ways. It’s a truly fulfilling experience.'
Robert Ferguson is 81 years old and from Glengormley. He is actively engaged with Age NI in many ways, including as a volunteer with the My Life My Way project.
‘Volunteering with Age NI has given me the chance to give something back and do something truly positive for others. The My Life My Way project is very close to my heart because of my own personal experiences. My wife, Olive lived with vascular dementia and I cared for her for many years until she passed away in 2013.
'I know that lots of people, having lived with challenges of dementia, might feel unsure about dealing with those challenges again. For me it’s the opposite. I am keen to use my experience to help.
'I'll always have the memory of my wife Olive, and the life we shared together before dementia came into our lives, and I know the experiences I had while caring for her can help me to support other people. There are times when I feel very lonely. It is as though the world has disappeared.
'I am fortunate that I have a network of friends and family to help me through those lonely times, but there are many people with dementia, and many carers for people with dementia, who are without support and understanding. That’s why I feel so fortunate to be involved as a volunteer with My Life May Way; I can be there for others when they need help and care.’
If John, Des and Robert have inspired you to give a couple of hours of your time as a My Life My Way Volunteer, please contact Mandy Wilson on telephone 0743 658 1438 or email firstname.lastname@example.org