Reflecting on a lifetime of dementia research and care

Professor Henry Brodaty reflects on his career after receiving a lifetime achievement award from Dementia Australia for his contributions to dementia research and care.

As a junior resident medical officer, I decided my career path was going to involve the brain. In deciding between psychiatry and neurology, my journey traversed internal medicine, general psychiatry, psychotherapy, acute psychiatry, mood disorders, psychogeriatrics and dementia.

How did I land on dementia? My own family experience of the lack of support for people with dementia, and learning about developments abroad spurred me to help establish the Alzheimer’s Disease and Related Disorders Society (ADARDS) NSW in 1982. Similar organisations soon sprang up across Australia. In 1984, a federation of state associations formed ADARDS Australia, later rebranded as Alzheimer’s Australia and now as Dementia Australia. This consumer-based movement was to transform care, support, public policy and research for the dementias. In the same year, Australia was one of four nations that established Alzheimer’s Disease International (ADI). ADI now has 120 national associations as members. These associations are influential in reducing stigma, advocating with governments, and developing policy nationally and, with the World Health Organization (WHO), internationally. For me, it has been a privilege to be part of this movement and enormously rewarding.

I moved into clinical work with older people, then research and later into policy, becoming a full-time psychogeriatrician in 1990. It’s been a fabulous journey, which continues to excite me. Previously, when I told people I was working in dementia, they used to say it must be so depressing! How can you work in this field?

Today it’s different! People always ask what’s the latest in research? The community is hungry for news. In the 2021 census, for the first time, Australians aged over 64 outnumbered children aged under 15. Today, more of us are worried.

Dementia is such a superb paradigm for the complexity of health care. Clinicians, researchers, aged care providers and policy makers need to grapple with medical, psychiatric, social, policy and economic issues. Clinically, the complexity of multiple comorbidities, physical and social problems is challenging, intellectually stimulating and fulfilling. Happily, for me, it brings psychiatry closer to neurology and allows me to be a clinician, a researcher and a contributor to policy.

Over the last 35 years, I have been focused on dementia research. In 2012, Perminder Sachdev and I founded the Centre for Healthy Brain Ageing (CHeBA) at UNSW with the vision of achieving healthy brain ageing through research. Let me illustrate some of the challenges and how we have been trying to address them through research.

Diagnosis

Before the 1980s, older people declining cognitively were diagnosed with “senile dementia”. Alzheimer’s was considered a rare type of presenile dementia. Precise diagnoses were unusual and management was abysmal. That changed when neuropathologists reported that brains of older people with dementia had the same pathology as presenile Alzheimer’s. Several centres in north America and Europe had established specialised dementia centres.

In 1985, I launched one of the first memory clinics in Australia. Located at Prince Henry and Prince of Wales Hospitals, we provided a multidisciplinary comprehensive assessment including psychiatry, neurology, neuropsychology, occupational therapy and social work input and appropriate investigations. We provided feedback to patients, families and referring doctors. The memory clinic provided a fertile training ground for specialist doctors and allied health and a model for others wishing to set up memory clinics. We provided follow-up, referrals to other services and opportunities for patients to engage in research.

However, diagnosis remained a challenge in primary care. Our survey of dementia family carers told us about their difficulties in obtaining a diagnosis, information about management or any idea about prognosis. Patients consulting their GP were often told it was just old age. A minority were referred to specialists who mostly provided diagnoses but almost no continuing management.

To discover the issues challenging GPs, we surveyed 1-in-5 Australian GPs. They reported a lack of confidence in making a diagnosis, lack of time, lack of skills, nihilistic attitudes (“what’s the point of making a diagnosis?”) and benign paternalism (wishing to protect their patients from a diagnosis). In response, we designed the General Practitioner Assessment of Cognition (GPCOG), a 4-minute cognitive assessment that proved at least equal to the Mini Mental State Examination. Years later, we collaborated with Dementia Australia and other academics to provide training to 5000 GPs across Australia.

In recent decades, we have been more ready to listen to people with dementia. They want strategies to live positively with their condition and help with “re-ablement”. This new paradigm is slowly taking hold and was the basis for our website, forward with dementia, designed with and for people with dementia, family carers and clinicians.

Carers of people with dementia

Aware of the negative psychological effects of dementia on family carers, I designed a ten-day residential dementia carers program. Our randomised controlled trial showed it was possible to reduce carer psychological distress, save money and delay nursing home admission (five-fold over seven years). It was emulated internationally.

Behaviours and psychological symptoms associated with dementiaare often the most challenging issues for GPs to manage. Our randomised controlled trial to reduce aggressive behaviour in nursing home residents showed that while residents on placebo improved, possibly because of the extra attention received from repeated research assessments, risperidone was significantly superior. A startling finding was the increased risk of stroke among residents on risperidone. Later, when mortality rates were also found to be higher, black box warnings were issued worldwide against using antipsychotics in people with dementia.

So, we embarked on a trial of deprescribing antipsychotics. We trained nurse champions in 23 nursing homes in the management of changed behaviours and academic-detailed GPs on the dangers of antipsychotics and how to deprescribe. Within three months, there was an 85% reduction of antipsychotic use, which was sustained in 75% of residents over 12 months.

Non-pharmacological strategies for agitation and depression commonly occurring in aged care residents were required. Our study of humour therapy demonstrated significant reductions in agitation and improvement in depression. Other randomised control trials confirmed that person-centred care training for nurses reduced agitation and at very little cost.

We have now produced evidence-based guidelines for managing changed behaviours as printed materials, an app and website for clinicians (BPSD) and an app and website for family carers (CareForDementia).

Preventing dementia

Although there is no evidence that we can prevent dementia, we may be able to delay onset of cognitive decline with ageing. To identify risk and protective factors, we recruited and assessed 1037 community dwelling dementia-free people aged 70–90 at baseline and biennially over 14 years. We confirmed known risk factors such as low education, high blood pressure, at the lipoprotein E4 genotype, diabetes, other vascular disease, lack of physical activity and poor nutrition. Twenty years later, we are replicating that study with a new 70–90-year-old cohort, to determine whether there has been a generational change in risk factors and incidence of cognitive decline in Australia as has been reported in Europe and USA. These data will be helpful to plan for future services and community needs.

Next, we designed and trialled an online Maintain Your Brain program to prevent cognitive decline with ageing. Our randomised controlled trial (n=6104) demonstrated that online active coaching in physical activity, brain training, nutrition and depression/anxiety treatment could improve cognition.

We are at an exciting time with developments in treatments with monoclonal antibodies and biological markers for Alzheimer’s and other dementias, digital biomarkers, greater understanding of risk factors, ways to help people with dementia live positively and for their families to cope better. A new National Action Plan for Dementia Care will be released imminently. The Australian Institute for Health and Welfare (AIHW) has created a National Dementia Information Hub. The Australian Dementia Network (ADNET) has established a Clinical Quality Registry aiming to enrol all persons diagnosed with dementia or mild cognitive impairment to improve quality of diagnosis and management. Multiple initiatives are underway focusing on drug discovery, biomarker diagnostic advances, non-pharmacological management, vascular cognitive impairment, social determinants of health and ageing and improvements in care.

Researchers and clinicians are stepping up to the challenge of living our lives with preserved cognition as the population ages. I consider myself fortunate to have been part of this movement over the last 40 years.

Henry Brodaty is a researcher, clinician, policy advisor and strong advocate for people with dementia and their carers. At the University of New South Wales (UNSW Sydney), he is Scientia Professor of Ageing and Mental Health, and Co-Director of the Centre for Healthy Brain Ageing and a senior psychogeriatrician at the Prince of Wales Hospital, Sydney. He serves on multiple committees for the New South Wales and Australian governments and WHO.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

Subscribe to the free InSight+ weekly newsletter here. It is available to all readers, not just registered medical practitioners. 

If you would like to submit an article for consideration, send a Word version to mjainsight-editor@ampco.com.au.