Better communication about the symptoms and palliative care of terminal dementia is helping carers and families reports Megan Stoyles.

Most residential aged care staff and families are unaware that dementia is a terminal condition and do not recognise its symptoms leading to death. Both groups misread behavioural changes marking the onset of terminal dementia, often mistaking them for an “improvement in behavior”.

Staff need specific education about dementia to improve communication with families and to ensure palliative care is provided rather than inappropriate, unnecessary and painful interventions or hospital admission, according to new research undertaken in Victorian and Tasmanian facilities.

Fran McInerney, professor of aged care at the Australian Catholic University/Mercy Health spoke recently to Palliative Care Victoria on Opening a Dialogue – improving communication and practice in advance care/end of life care planning in advanced dementia.

She was describing the results of her research funded by the Department of Health and Ageing in round five of the Local Palliative Care Grants Program which focused on dementia.

“Our research confirmed that there is a lack of awareness of dementia’s terminal nature among residential care staff and family members”, McInerney told INsite.

“This means poor communication between staff and family members about dementia’s likely trajectory, which can contribute to burdensome and futile treatment for those with advanced dementia approaching the end of life. There is a lack of understanding of the possibilities offered by a palliative approach in dementia care.”

McInerney did her research with the Wicking Dementia Research & Education Centre (Tas), and Curtin University (WA). Research interviews, training and piloting of educational resources took place in Catholic Homes and Royal Freemason’s facilities in Melbourne, and Southern Cross Homes and One Care in Tasmania.

Some 323 staff (52 RN; 50 EN; 221 PCA/lifestyle) were involved, along with families of 257 residents diagnosed with dementia, plus another 77 whose relatives were in a dementia specific unit. Existing and specifically tailored information about dementia was evaluated, information and training sessions were held, and a geriatrician briefed families and staff in Hobart about the trajectory of the disease.

The research showed that following staff education there was a significant increase (42 per cent) in knowledge relating to dementia as a terminal condition, and in understanding of later-life symptoms of dementia, e.g. dysphagia, impaired mobility, and increased infection rates.

Following education families also recorded a jump in knowledge and understanding; 59 per cent recognised the disease as terminal, up from 38 per cent pre-testing. “The lack of knowledge by care staff meant that they were effectively misleading families about the current level of their family member’s condition. For example they would use the drop in adverse behavioural symptoms as reason for optimism, while in fact it was demonstrating the onset of end of life,” McInerney said.

“Additionally, staff would make excuses or cover up a decline in the resident’s condition, rather than use it as an opportunity to suggest talking to the GP or the nurse about what it meant in terms of nearness to death or the downward trajectory of the disease.

“We need to educate and enable personal carers to feel confident to have a suite of responses to take those discussions further. We don’t want to burden them with treatment discussions beyond their capacity, but many opportunities go begging because they can’t engage in dementia talk.

“There is a common human feeling, not wanting to be the bearer of bad news, as there is a widespread stigma about dementia. Even when inviting family members of those people with dementia living in the general residential care population to participate, we didn’t say ‘it’s about your relative with dementia’; we said ‘this may or may not be relevant to your loved one’s situation’.”

She said there were a couple of responses from the families of residents in dementia specific units denying that their loved ones had dementia: they had a ‘genetic’ condition, or they just ‘prevaricated’. There was a common feeling that dementia was a mental condition, not a terminal one, for example, ‘It’s not as though he’s a sick person, it’s just the head’ and ‘He doesn’t have any other problems, like medical problems ...’, she said.

“The failure to recognise that dementia has global effects on the brain and therefore the body, left the issue of dying from dementia in a confused, peripheral basket for most relatives,” McInerney said.

“Such lack of understanding can mean that appropriate steps such as advance care directives are not put in place reflecting dementia’s terminal nature. Sometimes family members in our study had ticked all the boxes on the future care wishes form, including both rejection and acceptance of medical treatment, and ranging from supportive and palliative care to acute and emergency care for the end of life symptoms of dementia. This makes decision making all the more complicated.

“However, once the family had been informed about the terminal nature of their relative’s dementia they were more supportive of appropriate palliative rather than hospital-based end-of-life care; for example, ‘we did talk about palliative care and I said, yes [care for him] here. There’s no need to go to the [hospital].’

“One family member commented that: ‘[the dialogue] should be just a standard issue for all facilities to have this discussion regularly, and it surprises me in a way that it has to go through a researcher like you to suggest that this is what happens.’ ”

McInerney and her colleagues’ research makes specific recommendations regarding the provision and distribution of information on dementia to family members of those with dementia on admission, and that there be regular follow-up meetings to address changing situations and to engage in care planning.

Other recommendations include creating RN “Champions in dementia care”, to aid in sustainability of information and ongoing training for all staff, and that internal case reviews of people with dementia being transferred to hospital be undertaken to assess efficacy of decisions.

There are also a number of broad systemic recommendations covering ongoing partnerships between aged care providers and educational centres such as universities, and the preparation, provision and distribution of evidence-based dementia-palliation resources.

For further information, email McInerney: fran.mcinerney@acu.edu.au