Providing Care and Support for People Living with Dementia

The 7th Annual National Dementia Conference 2016 will discuss improved outcomes for people living with dementia and their families, carers and service providers. The event is proudly supported by Alzheimer’s Australia, the Australia Journal of Dementia Care, the Australian Pain Society and the Joanna Briggs Institute.

In the lead up to the conference we had the chance to speak  with one of our speakers, Denise Craig, who is a Senior Psychologist ACAT & Memory Service, and Co-chair for the State-wide Dementia Clinical Network at Queensland Health, about care and support for people living with dementia.

Denise’s presentation about ‘Post dementia diagnosis enablement – raising awareness and reducing stigma’ will take place on Monday 21st March, and she will also be chairing day two of the conference. 

1. Can you provide an example(s) of how you, your organisation or your local networks have helped to increase the awareness of dementia over the last 6-12 months?

Denise: As a private initiative, I established and facilitate a social media-based support group on Facebook, through which the perspectives of people with dementia globally are encouraged. Facebook facilitates communication at an astonishing rate and it helps to raise awareness of the diversity of experiences. Through the Young Onset Dementia Support Facebook page and valued conversations with consumers, I came to realise that worldwide, people with dementia often feel unsupported by the medical profession which diagnosed them. GPs are expected to support people diagnosed but they are often unaware of possible benefits and options.

I think that as a society, we need to do all that we can to assist those diagnosed to live to their potential. Accordingly, the Qld Statewide Dementia Clinical Network recently completed a post diagnostic care pathway to encourage GPs, Health Professionals and consumers to access multidisciplinary support. The pathway has an ‘enablement’ focus and is designed to foster maximal quality of life.

2. What role do GP’s, service providers, specialists, and caregivers play in providing a timely diagnosis of dementia and support for a patient with dementia?

Denise: Families, friends, GPs and health professionals/service providers have an important role to play in recognising that a person may be experiencing changes associated with dementia. The first port of call for support is generally the GP. For GPs it is important that they take seriously all raised concerns. Consumers frequently report feeling ‘fobbed off’ and disempowered by GPs, particularly those later diagnosed with Young Onset Dementia. Older people too can feel as though their symptoms are just ascribed to ‘age’.

Dementia is NOT a normal part of ageing, there are many things that can be done to assist them, and no, young people are NOT too young for dementia.

Whenever available, onward referral to a memory clinic/service or other similar specialist/s should be completed in a timely manner. If a diagnosis of dementia occurs, regular monitoring of needs and the potential benefit of allied health or other onward referral should be considered and discussed frequently.

3. What are the key aspects of providing person-centred care to a patient diagnosed with dementia, including considerations for families and carers?

Denise: Person centred care requires that we respect the person. To do this we need to see the person, don’t stop at the diagnosis! What are their goals and values; history, culture, ethnicity, sexuality/gender, religiosity or spirituality?

Recognise the importance of happiness and contentment, promote autonomy, foster relationships, use affirming and useful communication, respect personhood and value their expertise. Ascertain strengths, limitations and barriers to living well. Respect individuality and strive to assist people to enjoy the highest possible quality of life!

This applies to care partners and family members too. We need to understand care partners and assist them to understand the nature of dementia in their specific circumstances. We must ascertain their resources and limitations, and respect, educate and support them.

I always say we need to listen with our eyes open. Reflect on our own limits, and upskill.

4. How does dementia affect the behaviour of people living with dementia? And what advice can you offer those who provide care and support for their family or friend who is living with dementia?

Denise: Changes in behaviour signal changes in needs. My advice to family and friends who are providing support is to do your best to understand the needs of the person diagnosed. Understand that changes occur because of changes in the brain. No one asks to develop symptoms of dementia, and those diagnosed are usually doing their best and want to be respected, included and understood.

I always encourage care partners to ask the person with dementia for their input. After diagnosis, many family members/friends take over responsibilities and often people with dementia feel left out. Ask them to share their stories and share how they’re feeling. Tap into their strengths and look for ways to encourage ongoing contribution.

Understand your limitations, strengths and weaknesses, and access support. There are many options now, so find one that suits you.

5. From your experiences, what is important to people living well with dementia, and how can the community make a difference in their lives?

Denise: People with dementia usually tell me that they want to be heard, valued and included. They want to be respected for the person they have always been and the person that they are. They are often fearful of, or aware that, they are perceived as ‘fading away’ – when in fact they are ‘still here’, albeit with changing needs and changes in the way they communicate.

I think as a community we need to see people with dementia as individuals with a story to tell, with strengths, with needs and values and goals. We need to encourage and support, not leave them to struggle along feeling isolated, lonely and unworthy. We need to encourage everyone to live as well as they can, for today.

6. Are there any presentations from the 2016 National Dementia Conference that you are particularly looking forward to and why?

Denise: I’m looking forward to hearing from John Quinn. John is a wonderful example of someone diagnosed with dementia, who with support of his partner Glenys, faces each day, each hurdle, each high and low and simply applies himself to living well alongside his diagnosis.

I’m also looking forward to hearing from Susan Field about Power of Attorney documents because I promote the use of these every day, and Dr Catherine Barrett’s presentation about LGBT consumers.

I am aware of some really interesting complexities experienced by people in the LGBT community.

We are looking forward to Denise’s presentation at the upcoming 7th Annual National Dementia Conference, taking place at the Novotel Brisbane on 21st- 22nd March 2016.