COGNISANCE

COGNISANCE is an international consortium led by CHeBA that is focused on improving clinicians’ communication of a diagnosis of dementia and provision of effective support to patients and families in the first year following diagnosis.

International data collected from surveys, interviews and focus groups during 2020 supported previous findings that communicating a diagnosis of dementia is not universally done well. In Australia, interviews and focus groups with 9 people living with dementia, 17 care partners and 19 health care practitioners found the support following diagnosis was, at best ‘hit or miss’.

While there are services, these usually focus on supporting people with functional decline which are often not key needs immediately following diagnosis. Existing services do not routinely promote reablement which could maintain or even improve engagement with life and prevent issues arising from dementia before they occur. Counselling and support from peak bodies was appreciated by people living with dementia and their care partners but long waiting lists indicate that there is simply not enough to go around. People living with dementia and their care partners expressed the need for tools to enable them to planahead. Lack of support was more keenly felt by people living in rural Australia. COGNISANCE research teams in Australia, Canada, Netherlands, Poland and United Kingdom are working towards changing this situation.

Over 2020 we brought together a diverse range of stakeholders in co-design groups to develop a marketing campaign for social change. The campaign champions change of practice to make diagnosis a starting point for an effective plan of support, and to empower people living with dementia and their care partners to take action and to seek and receive support. The overall goal is to tangibly improve their lives in the 12-months following diagnosis.

Work in 2020 has resulted in the development of a global campaign “Forward with Dementia”. The campaign is spearheaded with an international website containing practical, action oriented, evidence informed content that speaks directly to people living with dementia, their care partners and health and social care professionals. Local campaigning including webinars and capacity building activities are being planned in each of our participating countries. The website and campaigns will be launched mid-2021.

Ashley Stevens, Dr Meredith Gresham, Nora Wong

In 2020 CHeBA partnered with Dementia Australia on this opinion piece.

The proportion of people with dementia in rural and regional Australia is consistent with that of metropolitan areas. Access to diagnosis and support however is not. This inequality across the country poses enormous challenges to people with dementia and carers.

Dementia is one of the leading causes of chronic disability in Australia and the second leading cause of death overall. It is the leading cause of death amongst women. By the middle of the century, it is predicted that the number of people living with a diagnosis of dementia will increase from 459,000 to over one million people.

According to Professor Henry Brodaty, this increase largely reflects an ageing population in Australia, with age being the most significant risk factor for developing dementia, and the population in regional Australia being older than that in city areas.

However, capacity to access timely diagnosis and quality support services is, unequivocally, not equitable across Australia. Nearly 30% of the Australian population live outside metropolitan areas, with a two and a half times higher rate of potentially preventable hospitalisation – likely related to distance and more limited access to health care compared to metropolitan dwellers.

CEO of Dementia Australia, Maree McCabe says that considerably fewer health care professionals, including general practitioners, practise in rural areas. Yet, the proportion of people with dementia in rural areas is consistent with that in metropolitan areas (Australia Dementia Report 2013) and is projected to increase equally over coming decades. By 2050, it is projected that 2.9% of the population living in capital cities will have dementia compared with 3.8% in the rest of Australia. The challenges for people living with dementia and their supporters are compounded in regional areas by geographic isolation, travel distances and limited services and resources.

Yet, as noted by Dementia Australia, decisions around the policy, planning and design of services tend to be city-centric.

People living in regional, rural and remote areas deserve to have equitable access to services and be supported to remain living in those areas throughout their experience with dementia.

The key concerns and challenges for people with dementia, carers and service providers in regional, rural and remote Australia are significant. Beyond assessment, diagnosis and management of dementia they include opportunities for social engagement and community participation for people with dementia and carers, workforce issues for community, as well as respite and residential aged care services.

Many people currently living with dementia never receive a formal diagnosis. Although exact figures for Australia are unknown, it is estimated that between 44 and 70% of people with dementia in the UK and Canada – countries with similar health care systems to ours – remain undiagnosed.

Factors such as stigma and fear of dementia, particularly in rural areas, can discourage people from seeking a diagnosis. Some doctors believe that as there is no cure for dementia a diagnosis will only cause the individual and the family distress. Even for those receiving a diagnosis, post-diagnostic support is sorely lacking.

According to Dr Meredith Gresham, Study Coordinator of the COGNISANCE project, these circumstances need to be overcome. Diagnosis and post-diagnostic support are fundamentally important; rural areas need to be as well supported as their metropolitan counterparts.

To address this, Professor Brodaty, Dr Gresham and their team at the Centre for Healthy Brain Ageing are leading COGNISANCE, an international project designed to improve the experience of dementia diagnosis and post diagnostic support, through the development of critical toolkits for people with dementia, their care partners and health care professionals.

Clearly, we need to find ways to address gaps in service provision for carers and people with dementia and the evident divide between dementia diagnosis and post-diagnostic support in rural and regional centres.