Restoring control after dementia diagnosis

Our research conducted at Flinders University suggests a new approach may help people feel more positive about the future after a diagnosis of dementia or mild cognitive impairment (MCI), write Professor Kate Laver, Dr Miia Rahja and Amelia Winter.

Approximately 240 people are diagnosed with dementia or MCI – a precursor to dementia – every day in Australia. Diagnosis most often occurs when symptoms are mild.

However, a dementia or MCI diagnosis can be confronting, and many people will struggle to come to terms with their diagnosis. Additionally, some people will experience grief related to actual or perceived loss associated with their diagnosis and may experience impacts to their self-esteem.  

Unfortunately, despite the known impacts to wellbeing of receiving a dementia or MCI diagnosis, many people don’t receive support for their wellbeing in the early days post-diagnosis. Instead, the only receive support when their symptoms are more severe, and their quality of life has been significantly affected.

Our team aimed to change this by looking at ways people can receive support sooner and slow the progress of dementia, enabling people with dementia to live longer, healthier and more fulfilling lives.

Take Charge is a program that has been developed for people with a range of chronic conditions, including stroke. It is designed to encourage autonomy and a sense of purpose in people facing potentially life-limiting conditions.

Having been found effective in people who have experienced stroke, the Take Charge approach was adapted for people with MCI or dementia and we investigated it as a potential means to improve quality of life in the early stages post-diagnosis.

This study involved 160 people who had received a diagnosis of dementia or MCI in the past six months. Half of participants received the Take Charge program, which involved two 60-minute consultations with a health professional. Participants were encouraged to reflect on their values and priorities for the upcoming year and were supported to reflect on what was important to them and set goals.

The other 80 participants received regular lifestyle education from their health professionals, such as written information covering brain and heart health, nutrition and social connections.

All participants completed a series of measures at the time of diagnosis, and then at three months and six months post-diagnosis. These measures were designed to examine mood, hope, quality of life, activity engagement, and memory.

No differences were observed between the two groups for quality of life at any of the time points. However, people receiving the Take Charge intervention showed improvements in their mood.

We also conducted interviews with participants and their carers to explore people’s experience with the Take Charge program. Nine people with dementia and five carers took part in these interviews.

Participants reported that the Take Charge program helped them build self-awareness, which in turn empowered them to take action and follow through with their goals and plans.

They also reported feeling more positive about life post-diagnosis, and being able to reflect on their situation and how they could approach it more positively.

However, people also reported that the attitude they had going into the Take Charge program impacted how much they participated and therefore whether it benefited them. One carer reported their loved one’s dementia was too advanced for the program to be beneficial.

Research suggests that the average person will live for approximately seven years after a diagnosis of dementia. To date, there has been limited research into the ways people can be supported to live more fulfilling lives post-diagnosis.

While more research is needed into the different supports and interventions needed to improve wellbeing and quality of life for people with dementia, our research gives us a foundation to continue working towards a solution.

By implementing practices that support people as soon as they receive a diagnosis, we can help to delay functional decline and increase people’s coping and give them the tools to live a fulfilling life. This research is a step forward in advocating for earlier intervention to support people’s wellbeing.

Professor Kate Laver, Dr Miia Rahja and Amelia Winter are researchers in the Healthy Ageing Support and Care team at Flinders University’s Caring Futures Institute

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