People with dementia deserve better: Improving models of palliative care for people with dementia

An article written by Dr Elissa Campbell, Geriatrician and palliative care consultant, WA Health.

No matter how you look at it, dementia has a huge impact on our community. Dementia is the leading cause of death of Australian women, second-leading cause of death overall and the leading cause of disease burden in older Australians. The number of Australians with dementia is expected to double during the next 35 years. Dementia Australia estimates that 1.5 million Australians are involved in the care of someone living with dementia. [1,2]

Dementia is a life-limiting illness, and people with dementia deserve to live their lives as well as possible, as is the goal of palliative care. Internationally, palliative care is explicitly recognised under the human right to health. Yet, people with dementia are less likely to receive palliative care than those with other diagnoses. According to the Palliative Care Outcomes Collaborative (PCOC), in 2022 only 5.1% of people accessing specialist palliative care in Australia had a primary diagnosis of dementia. [3] A Western Australian study of more than 5000 people dying from dementia showed that only 6% had received community based palliative care, compared to 26% of all people who died and 50% of people who died from cancer. [4]

Distressing symptoms and burdensome interventions are common in people with advanced dementia, including pain, agitation, breathing difficulties and swallowing issues. These often follow years of decline in physical and cognitive function, with associated physical, emotional and spiritual symptoms, plus strain for carers and family. [5] All of these may be addressed by palliative care.

One reason that people with dementia are less likely to access palliative care, and particularly specialist palliative care, is that traditional models of palliative care that arose from the modern hospice movement were designed for people with cancer, who experienced a relatively rapid loss of function in the weeks and months prior to death.  These models do not meet the needs of people with dementia, who live with their disease for years prior to death, and have a more gradual loss of function during that time.

A review of the current models of palliative care in WA surveyed people with life limiting illnesses, carers and families. The review found such inequities in care that it was entitled ‘Winners and losers in palliative care service delivery.’ The ‘losers’ included those who did not access specialist palliative care, those with non-malignant disease (such as dementia), those living in residential aged care facilities (the majority of whom had dementia), and family members and carers. [6]

It is clear that people living with dementia deserve better access to palliative care to help them live, and die, well. The evidence and my clinical experience support this, as do multiple State and National level policies, strategies and guidelines. This is what motivated me to undertake a Churchill Fellowship to explore models of palliative care for people with dementia, with the aim of gaining knowledge of successful models of care to adapt to the Australian setting.

Throughout the course of my Fellowship, I visited twelve cities in eight countries on three continents. I met scores of people and undertook a variety of clinical visits in clinics, hospices, residential facilities, and private homes. I also observed research work and interviewed clinicians, researchers, and community organisations. Overall, I identified 12 components of successful models of palliative care for people with dementia and made a number of recommendations to implement these in Australia.

If you’d like to know more

• My WA Department of Health Churchill Fellowship report ‘People with dementia deserve better: Exploring models of palliative care for people with dementia’, including a two-page Executive Summary, is available to download at the Churchill Trust website:  https://www.churchilltrust.com.au/fellow/elissa-campbell-wa-2020/
• A 30-minute webinar presented for WA Department of Health is available on YouTube https://youtu.be/2ThUsJKou_k

Authors:

Dr Elissa Campbell

Geriatrician and palliative care consultant

WA Health 

References:

1. Australian Institute of Health and Welfare (AIHW). Dementia: Overview [Internet]. Canberra: AIHW; 2023 [updated 2023 Aug 15; cited 2023 Dec 21].
2. Dementia Australia. Dementia statistics [Internet]. Sydney, NSW: Dementia Australia; 2022 [updated Mar 2023; cited 2023 Dec 21].
3. Blanchard M, Burns S, Connolly A, Clapham S, Daveson B. Patient outcomes in palliative care - Australian National report Jul-Dec 2022 (4.47MB pdf). Wollongong, NSW: Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong. 2023.
4. Rosenwax L, Spilsbury K, Arendts G, et al. Community-based palliative care is associated with reduced emergency department use by people with dementia in their last year of life: A retrospective cohort study. Palliat Med. 2015;29:727–36.
5. Sampson E, Candy B, Davis S, et al. Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life. Palliat Med. 2018;32:668-681.
6. Aoun SM, Richmond R, Jiang L, Rumbold B. Winners and losers in palliative care service delivery: Time for a public health approach to palliative and end of life care. Healthcare (Basel). 2021;9:1615.