With the Alzheimer’s Australia NSW Living Well with Dementia Conference just weeks away, here we detail a variety of strategies and services available to do just that.
Although living with dementia can be an isolating, confusing and difficult experience, with the right support, it is possible to live well with the disease.
A growing body of research has contributed to strategies for managing health and wellbeing. These studies are informing programs and delivering practical messages aimed at improving outcomes for people living with dementia, their families and carers. Not only that, they educate people on how to maintain joy, connectedness, meaning, security and autonomy throughout the progression of the disease.
Getting support from family, friends and services in the community can help people living with dementia do the things that they want or need to do.
“Getting a diagnosis of dementia can be very confronting, and it can be a time of immense distress, shock and grief,” says Alzheimer’s Australia NSW CEO The Hon. John Watkins AM. “It can also be very isolating. But you are not alone. There is a wealth of help and support available. You can live well with dementia if you are armed with the right tools, support and knowledge.”
Taking part in programs such as Living with Dementia can enable people with a diagnosis of dementia to better understand the condition and prepare for the future. Participants learn strategies for maintaining and enhancing skills and abilities. It’s also an opportunity to meet and talk confidentially with others in a similar situation.
“It has proven extremely valuable to many who have completed it, with some saying it has changed their outlook and understanding of what they are going through and, in a sense, saved their life,” John says.
“One said, ‘l learned a lot from the program and from others. I have become braver. I didn’t want dementia, but now I don’t hide myself at home anymore’. Another said it ‘made me feel I’m not rowing [the boat] by myself’, and another said it made them feel as if ‘there’s a light at the end of the tunnel’.”
Better Life is another program providing one-on-one coaching that anyone in NSW can access. Participants are matched with a personal coach who works with them over eight sessions to address areas where they want to improve. The program helps with issues like resilience, health and wellbeing, problem solving and planning for future needs.
Exercise and keeping active are correlated with high levels of wellbeing. Recent findings suggest that physical activity, apart from maintaining body functions, can be a way to sustain wellbeing and improve physical and cognitive functions in people with mild dementia.
For people living with dementia in care facilities, staff members need to ensure that their self-esteem, independence and personhood are maintained. To achieve this, initiatives must be designed to change attitudes, and improve knowledge and experiences of care staff.
For information or support, call the National Dementia Helpline at 1800 100 500 or visit: www.fightdementia.org.au
Case study: Mike and Linda Bryan
For Mike Bryan, who was diagnosed three years ago with Alzheimer’s disease, living with dementia can be a challenge. But by staying active, eating healthy, keeping his mind stimulated and maintaining social connections, he has retained a positive outlook and great quality of life.
“On the days that I’m not golfing, I usually go for walks,” Mike says. “I could sit at home in a lounge chair and rot away, or I can get out and introduce myself to everyone who lives on my street. Everywhere I go I try to talk to people, and I always ask for assistance if I need it. You have to let go of what your concerns are and just do it.”
Linda, Mike’s wife, says reading and socialising are two other activities that have helped Mike since his diagnosis.
“We stopped doing things for a while,” she says. “When you’re stressed, you have a lot of inertia. We stopped having people over and socialising as much as we used to.
“But we have started to have people over again and have really enjoyed it. I think it’s really important to keep that contact. It doesn’t take that long to get it back, even if you’ve neglected people or haven’t been in touch with them for a couple of years.
“For a long time Mike stopped reading, but he has recently started again and has really enjoyed it. It was a matter of finding books that are of interest to him and are written at a level he can manage.”
Mike and Linda found taking part in the Living with Dementia and Better Life programs, run by Alzheimer’s Australia NSW, to be beneficial.
“Better Life was fabulous,” Linda says. “It was the best thing because being one-on-one and tailored to what I needed was fantastic.
“The advice we can offer about living with dementia is that a lot of it is about your attitude. If you think you’re in a terrible place, then you are. If you think you’re lucky, then you are. For us, we are lucky to have a very supportive family and children.
“Look for help, because there are so many people who will support you if you ask. Having that support might be important for us because I know that things might get a lot rougher in the future.”
Living Well with Dementia Conference
Alzheimer’s Australia NSW’s inaugural Living Well with Dementia Conference will be held 22-23 August and will bring together leading experts to share strategies for helping people with dementia and their carers live a good quality life.
It will also provide a forum for professionals to learn more about how they can incorporate practices that support peope with dementia, their families and carers to live well.
Speakers include: Professor Sue Kurrle, Curran Chair in Health Care of Older People,
University of Sydney and NHMRC Cognitive Decline Partnership Centre, Hornsby Ku-ring-gai Health Service; Dr Frank Brennan, Palliative Medicine Physician, St George and Cavalry Hospitals, Kogarah; and Professor Sharon Naismith, Leonard P. Ullman Chair in Psychology, University of Sydney.
• Engage, Enable, Empower: Making the most of life with dementia;
• Living with Change and Loss;
• Leadership and Dementia;
• Respite Service Flexibility; and
• Dementia-Friendly Community: How can your business and community work towards being dementia-friendly?
Living Well with Dementia Conference
22-23 August, Rydges World Square, 389 Pitt Street, Sydney. For more information visit: https://nsw.fightdementia.org.au/nsw/events/living-well-with-dementia-conference-22-aug
Living well online
Keeping the mind and body active is essential. People who remain engaged with their day-to-day activities, interests and social groups often feel more satisfied and fulfilled, and continue to enjoy life and have fun. Research has confirmed that keeping active and eating well can help and might even slow down changes in the brain.
The Living Well with Dementia website is a valuable resource designed to engage, empower and enable people to achieve this goal and help to live a good quality life with dementia.
The site provides a range of advice, strategies and activities to keep the mind and body active, support services and health and nutrition advice, and numerous personal stories featuring people from all walks of life who are living with dementia and actively making the most of life. www.livingwellwithdementia.org.au
Services and programs provided by Alzheimer’s Australia NSW educate and support people with dementia, their families and carers in living well with the disease.
Living with Dementia
The Living with Dementia program provides information on dementia and support options. The program is group-based, and encompasses education and sharing experiences. After attending this program, participants say they feel a sense of hope following their diagnosis, and that it is still possible to live well with the disease.
Dementia Advisory Service: Dementia Advisory Services (DAS) workers provide dementia-specific information and support to people living with dementia, their families and carers. DAS provides practical advice about coping and living well with dementia in an effort to enhance quality of life and minimise the risk of premature or inappropriate admission to long-term residential care.
Younger Onset Dementia
The Younger Onset Dementia Key Worker program aims to improve quality of life for people with younger onset dementia (prior to age 65), their families and their carers. This is accomplished by providing them with access to a Key Worker to serve as their primary point of contact. This Key Worker will also work with them to develop strategies that optimise their engagement with support and care options. Key Workers deliver individualised, person-centred support, information and advice to improve quality of life.
Culturally and Linguistically Diverse
Providing support to people from non-English speaking backgrounds, known as culturally and linguistically diverse communities (CaLD), is the role of CaLD link workers. They raise awareness and acceptance in the community that dementia has a medical basis in order to debunk myths about the disease. This helps remove barriers for people in these communities, and it enables better engagement with health and community providers.
For more information, call the National Dementia Helpline on 1800 100 500 or email email@example.com