Supporting Families Affected By Dementia


27 Jun 2016

When a family member is diagnosed with dementia, it’s a difficult time for everyone – and practice nurse Jan Dunne understands those challenges from a personal perspective.

Jan’s husband John was diagnosed with early onset dementia in September 2015. She says her experience demonstrated both the importance of a timely diagnosis and the need for education and support for families.To gain more of an understanding of the illness and how she could help people in a similar position through her role as a practice nurse, Jan came across Primary Care Dementia Education sessions.

Jan says the sessions were a source of valuable information and a great way to learn how to make a difference in a professional context. “The sessions were fabulous and I learnt so much, such as what to expect when it comes to the changes and emotions you will face, the role loved ones play, and other tips and scenarios to look out for.

“One of the helpful resources I received through the sessions was the dementia poster, which informs and guides others about what the person with dementia is going through and the best way to interact with them. Even John thought it was great, so I gave a copy to every member of our family. From a nursing perspective, I would like to see this resource handed out to relatives.

“My personal experience also showed me there is a real need for support for the spouse of the person diagnosed – particularly for the younger age group. With more and more people being diagnosed with dementia at a younger age, I would like to see more communication and help offered to the families one-on-one, at a practice level.” A significant amount of work is currently being completed by the South Island Alliance’s Health of Older People Service Level Alliance (HOPSLA) to achieve this, and the sessions are an important step.

Jan’s personal experience and knowledge she gained through the sessions has helped bring about positive changes at her workplace, including ensuring referrals to Alzheimer’s support services. “After John’s diagnosis, I had to ask my GP for a referral to the organisation. This has now become standard practice at our clinic. It’s also about an awareness to listen to family if they have any concerns so that tests can be done as soon as possible – a conclusive and timely diagnosis is really important.”

The diagnosis of a loved one is a real grieving process, she says. “There are huge adjustments to make in your life and it’s an emotionally draining time. The role of the spouse is huge and you don’t get any break from that. It’s also hard to know whether you are doing the right thing or not with every little decision you have to make, so the more support and information you have, the better.”

Jan believes there is a real need for a greater awareness of the illness.“It’s about education and getting the word out there to lift the stigma. It’s important not to be frightened of these things so we can help make a difference to the lives of those affected by dementia.”

Two out of three New Zealanders are touched by dementia and the number of New Zealanders living with dementia is expected to triple by 2050.

To address this, dementia education sessions have been held for over 450 health professionals across the South Island over the past 12 months, as part of a Primary Care Dementia Education project. A range of online training resources have also been developed, to ensure consistent future learning.

The project was established to educate primary care health professionals around aspects of the cognitive impairment pathway available on HealthPathways, the importance of a timely diagnosis, promote a person-centred approach to caring for people with dementia and their families, and introduce the training available.

The South Island Alliance appointed Carole Kerr and Rebecca Winsor to coordinate the project. Carole is based in Nelson and has worked extensively within older person’s mental health services and also works as a dementia educator for the Walking in Another’s Shoes programme. Rebecca is based in Christchurch and has worked within the dementia assessment unit, and more recently as a clinical nurse specialist for older person’s health.

Dementia is a long-term condition that can be managed effectively in the community, says Carole. “For most people living with dementia, the majority of the care and support needed can be provided in their own homes. This is why it’s essential that people with dementia, along with their families, are assisted to maintain and maximise their abilities, optimise their sense of wellbeing, and have control over their circumstances.”
Diagnosing dementia had previously been part of specialist services and not usually primary care, she says. “Now that there’s a shift from a specialist focus to a primary one, we wanted to provide the education and training to support this.”

Carole and Rebecca began the Primary Care Dementia Education project in May last year and their involvement comes to a close on 30 June. Rebecca says it has been a satisfying and rewarding journey. “It’s been a really positive step towards raising the profile of dementia, as well as raising awareness of the HealthPathways available, and the role those pathways have in supporting diagnosis and providing a plan for the person going forward.

“One of our key goals was to ensure those who are diagnosed with dementia and their families or carers are referred to Alzheimer’s services as soon as possible and that they know exactly where to get the information and support they need.”

The development of online training resources for health professionals was one of the significant outcomes of the project, which began with a survey for primary healthcare providers across the South Island. The national training resources were then developed based on extensive feedback from the survey, as well as input from specialist services, primary care, and NGOs.

“We were also privileged to film interviews with people living with dementia, their carers and specialists. This footage was used for the resource. It’s the most comprehensive online dementia training available in the country.”

One of the benefits of online training is that it’s enduring, Carole says. “While people may prefer face-to-face sessions, it’s easy to forget a lot of what you learnt. With online training, the information is there to go back to if you need it.”

Support for the project was very positive, Rebecca says. “Everyone was really engaged and the PHO managers were instrumental – we could not have done this without their help. Many organisations have been proactive and made changes to their practices already. We are really happy with what has been have achieved so far and look forward to a more person-centred approach to diagnosing and supporting people with dementia in the future.”

Published on: Monday, June 27th, 2016, under Palliative Care