At the 2023 Oceanic Palliative Care Conference (23OPCC), Dr Elissa Campbell shared her 12 elements of care that should be included in palliative care for people with dementia.

As a Geriatrician and Palliative Care Physician, the majority of the patients Dr Elissa Campbell cares for have dementia.

“I see people throughout the disease trajectory, but … people with dementia spend 20% of their last six months of life in hospital,” she says.

“Hospital isn’t always the best place for people with dementia, but it’s often the only option that they have for care.”

In addition to this, people with dementia don’t always have access to palliative care when they need it.

Inspired by these issues, Dr Campbell sought solutions as part of her recent Churchill Fellowship, where she explored different models of palliative care for people with dementia, ultimately outlining 12 elements that should be included.

1. Care must be co-designed

“People with dementia and current and former carers of people with dementia must be included in the co-design of care models, including any resources and outcome measures,” Dr Campbell says.

“We must also include community groups, cultural groups, the LGBTQI community and dementia specific groups … to design culturally safe models of care.”

2. Care must be person-centred

“Care must be flexible and person-centred, with the intent of the care that’s provided dependant on the person’s needs and where they are along their trajectory with dementia,” Dr Campbell says. She adds that person-centred care should bring the care to the person when and where they need it.

3. Carers are essential

“Education, support and empowerment of the carer is essential,” says Dr Campbell. “This might include practical measures, respite, support with decision making, and connecting with existing health and social services.”

4. Diagnosis and post-diagnostic support are important

Education and intervention practices are the keys here, according to Dr Campbell’s research. “Primary care needs to be supported in diagnoses, ensuring there are clear referral pathways after a diagnosis of dementia,” she says.

5. Care navigation is essential, ideally with a single point of contact

According to Dr Campbell, care navigation brings many elements of person-centred care together. “Care navigators assist in navigating the complex network of palliative care, healthcare, aged care, community care and other services,” she says.

This can be extremely challenging for those with “cognitive impairment, stress, language barriers, technological issues and other barriers to access.”

Some models of care use community members while others use healthcare professionals as their care navigators.

6. Care must be needs-based, not prognosis-based

“In dementia, it can be particularly difficult to prognosticate,” Dr Campbell says of why needs-based care is so important for people with dementia.

7. Care must be multidisciplinary and interdisciplinary, yet also be integrated

“Wherever I visited on my Churchill Fellowship, everyone agreed that care needs to be multidisciplinary, which includes disciplines like palliative care, geriatric medicine and primary care,” says Dr Campbell.

“Nurses, pharmacists, occupational therapists, physios and more.”

8. Palliative care must be proactive, not reliant on referrals

“If we rely on referrals to palliative care, often it will come too late or not at all,” says Dr Campbell.

9. Outcomes of palliative care should be measured

“There are various outcome measures, looking at physical symptoms, psychosocial symptoms and carer burden, but the choice of outcome measures should be co-designed – what we think is important might not necessarily be what patients and their carers think is important,” Dr Campbell says.

10. Advance care planning is an important facet of care

“There are different signposts that may prompt advance care planning, such as diagnosis, transitions of care and end of life. Ideally, the carer should be included in advance care planning at all stages, while maintaining the autonomy of the person with dementia as much as possible through supported decision making,” says Dr Campbell.

“At the stage where the person with dementia no longer has the decision making capacity, the carer should continue to be supported.”

11. Public health interventions are key to sustainability

“We need to do much better public health messaging around dementia,” Dr Campbell says.

12. Big data and design methodology can help develop better models of care

“We need to use big data to really target where interventions can be of most benefit,” says Dr Campbell.

Ultimately, Dr Campbell says, “People with dementia deserve better access to palliative care and the benefits it can offer. If we improve palliative care for people with dementia, we improve palliative care for everyone.”

Video recordings of 23OPCC sessions involving Dr Campbell are now available to watch on demand via the 23OPCC Education Hub. Recordings are available free of charge to delegates as part registration. Subscriptions can also be purchased for between $200 and $400. More info and access - HERE.