Specialist palliative care for people with dementia

Palliative care towards the end of life is still all too rare for people dying with dementia despite the presence of clear triggers for action. Jennifer Todd and colleagues discuss the findings of their study

It is an established principle that people with dementia should have good palliative care, but there remains a failure to identify dementia as a terminal illness. Consequently, people have limited access to the specialist palliative care that they need.

Evidence shows that people are referred to specialist palliative care infrequently and later in the illness trajectory than people with other life-limiting illnesses (Allsop et al 2018). Despite experiencing a similar symptom burden to patients with cancer (McCarthy et al 1997), people with dementia are less likely to receive adequate symptom control and more likely to receive a poor quality of end-of-life care (Hughes et al 2007).

Dementia care pathways are complex and ill-defined, with families and caregivers finding it hard to access services (Sampson et al 2017). People with dementia have repeated A&E attendances and more unplanned and potentially avoidable hospital admissions towards the end of life.

We wanted to explore how specialist palliative care could help optimise symptom control and better support people at the end of life. Our study aimed to understand the experience of people with dementia in the last 12 months of life and the potential role of specialist palliative care.

Study design


We sampled people who had died in the previous 3-6 months, where dementia was the primary cause or contributed significantly to their death. People were identified by elderly care teams in two NHS acute trusts and matched against the hospice database. The nominated family carer/next of kin was contacted by letter, asking if they wanted to participate. If they did not respond no further contact was made and written consent was obtained from those who did wish to take part.

Mixed method design

Demographic data, clinical and healthcare information were collected and the Functional Assessment Staging Scale (FAST– see table 1 below) was used to estimate physical and cognitive ability at key points during the last 12 months of life (Sclan & Reisberg 1992).

Narrative interviews with bereaved family/carers explored the witnessed experience of people with dementia in the last year of life. Interviews were tape-recorded and transcribed verbatim. The holistic-content approach was used to analyse the narrative interviews (Lieblich et al 1998).

Individual illness trajectories were built from each data source and superimposed on to a graph. This chronologically mapped events over the last 12 months of life: referral to different services, triggers for change in care setting or hospital admissions, acute events, symptoms or behaviour.

For referrals to specialist palliative care, the source, timing, trigger and role of the service were reviewed. Emerging themes, patterns, commonalities and exceptions were explored. In terms of user participation, a steering group, including a bereaved carer who had cared for her husband with dementia, oversaw the study design.


We approached 34 carers of people, 15 of whom consented to interviews. They were all relatives: daughters (6), sons (3), wives (3), husbands (2) and one sister. Ten of the people with dementia were female and five were male, and their mean age at death was 86.5 years (range 65-96). While the sample was small, it gives some valuable insights.

Two trajectories emerged typifying the experience of the last 12 months of life for people with dementia and their carers (see figures, right). First, there were repeated acute deteriorations requiring health care interventions (figure 1) and, second, a continued slow cognitive and physical deterioration (figure 2).

In spite of this, there appeared to be little ‰
‰ recognition that the people concerned were
approaching the end of life.

As the last 12 months began, cognitive impairment had been present for 1 – 21 years (mean 5.4 years) and dementia had been diagnosed for 1 – 8 years (mean 4.2 years). With one exception, there had been a gradual onset and slow progression of cognitive impairment, characterised as “prolonged dwindling” (Murray et al 2005).

Initial FAST scores ranged from mild to severe dementia (2-7b). The majority had moderate dementia, two were completely immobile, six had reduced mobility and seven were independently mobile. Among the issues noted were walking with purpose, night-time waking, agitation, low mood, irritability and individuals’ awareness of their cognitive decline. Multi-morbidity was common and associated with increased service use. FAST scores indicated advanced and progressing disease at six months (range 6a-7c) and at 11 months (7a-7f).

While little was said about pain or other physical symptoms in clinical records, families did find supporting nutrition and hydration increasingly difficult. As one relative put it:

The last year I would say mainly, it was biscuits and cheese. I used to take him grapes, or he’d have banana, he’d eat porridge, cereal, but that’s when he lost weight (ιnterviewee 3: wife).

Dehydration, constipation and aspiration pneumonia were documented reasons for A&E attendance. Communication with individuals was challenging, as was their ability to report their feelngs and physical symptoms. The father of interviewee 8 constantly held his side, but it was only after a hospital admission months later that he was diagnosed with advanced lung cancer, and it became apparent that he had suffered significant pain from it:

We thought that it [the pain] was to do with dementia as he kept holding his side.

Families and carers said navigating health and care services to get help was no easy task. They described their struggle to get their relatives home once they had crossed the hospital threshold, one daughter talking of a “revolving door”:

Every time we were going in there thinking, if we can get out fast enough, we can avoid getting to the next stage. She didn’t feel secure and calm. …A&E is not a secure, calm place… we were stuck in this terrible loop, and I had to be very insistent and co-ordinate all the people to get her out of there (interviewee 12: daughter).

Along with a diminishing ability to communicate came agitation and sometimes aggression. Many families had been responding to stress and distress behaviours for years. Night-time purposeful walking was common at home and in care homes, and it was particularly exhausting for family members.

He would just get up and wee all over the place… at least five times in the night. He did get very angry sometimes… I suppose I’ve had very little sleep for a long, long time. I mean, it started three years ago (interviewee 14: wife).

Significant distress followed any acute event or change in care setting, as was evident in both clinical records and interviews. Carers described in detail the challenges of supporting their relative with dementia in an acute care setting.

At the beginning of the year, place of care was home (8), care home (5) or assisted living (2). Of those living at home, two lived alone. Care home staff and families were the main source of care at this time. Acknowledging they could no longer cope, often after years of caring, was a sad time for some relatives.

Eleven required a change to their usual place of care during the last 12 months and moved into a care home, while four remained at home. Place of death was hospital (6), care home (5), hospice (2) and home (2). Seven died in their usual place of care.

End of life

Events and crises were more common in the last 12 months, with reducing mobility, increasing falls, and reducing nutritional and fluid intake. Only two of the 15 people with dementia had completed an advance care plan (ACP), although all had “Do Not Attempt CPR” orders within the last days or weeks before death. There was limited and very late recognition that they were entering the final days or hours of life:

One day the doctor came, they were always very nice, and said I’m doctor so and so and I’ve come to take some blood… it seems rotten that, doesn’t it, that invasion, when somebody is so near to the end (interviewee 14: wife).

Overall, however, interviewees were positive about the care their relative received in hospital and care homes, although some voiced concerns about coordination of care and communication.

Palliative care

Twelve of the 15 were referred to specialist palliative care. But the median time between referral and death was only 10 days (ranging from 2 – 120 days and nine were referred less than eight days before death. Main reasons for referral were support for carers, and support and education for hospital or care home staff (on the use of syringe drivers, symptom control, and end of life care) (table 2).

Both people with dementia who died in their own homes were known to the specialist team, but only three of the six who died in hospital were referred to the hospital specialist palliative care team. Despite final admissions lasting 12, 18 and 33 days respectively, these three referrals were made late, only two, five and seven days before death. Two died in the hospice after short stays of two and three days respectively.

Acute events and crises

Out of the 15 people in our sample, 14 had to go to A&E at least once in their last 12 months (range 1-6 times). Reasons were:

  • falls (13 cases);
  • fractured femur (6) (5 died in hospital in 14 – 32 days)
  • fractured humerus (1)
  • infection (10)
  • dehydration and constipation (3)
  • pain (2)

Nineteen of the overall 28 A&E attendances resulted in hospital admission (9 had 1 admission, 5 had 2 admissions).

Multi-professional team

People with dementia required care across diverse settings, making coordination of care a challenge, and only two carers received consistent formal support. Multi-professional working appeared fragmented; carers describing limited communication or coordination of care between different health and social care providers, and the challenges of navigating these themselves. Medical support was predominantly reactive, responding to acute events or crises.

You’ve no idea, I don’t know what I’m looking for in a care home, and that’s the problem. But of course, that’s all off your own bat. You’ve got to work that out yourself (Interviewee 5: son).

Carers felt a real sense of responsibility for care and decision-making, adding to their burden.


Our study found that support for people with dementia and their families towards the end of life was lacking. Clear triggers for generic and specialist palliative care input were present, but often not recognised by health care professionals, which resulted in reactive care and lack of attention to physical symptoms.

Clinical records and interviews clearly demonstrated the distress of acute events experienced by people with dementia and their family caregivers. Frailty, recurrent infections, and falls were common, resulting in unplanned and potentially avoidable hospital attendances that caused significant distress for both people with dementia and their relatives.

Hospital admissions for infection, dehydration and constipation could potentially have been managed in the usual place of care. Though ‰
‰ hospital was unavoidable following fractures, falls prevention for people with dementia needs more attention. Assigning key health professionals to older people at risk reduces the frequency of
end-of-life A&E attendances by improving care coordination (Bone et al 2019).

While the near absence of advance care plans compounded the risk of hospital admission, completing one is a tough proposition for someone with a dementia diagnosis. It requires mental capacity, which is why early conversations are preferable, before the ability to consider the future is compromised. Support and education for people with dementia, families and care home staff to facilitate timely and sensitive conversations about an advance plan could help prevent avoidable hospital attendance.

Failing to recognise pain and other symptoms, and focusing instead on the associated behavioural problems, can deny people appropriate treatments. Training for health care staff in pain and symptom management, including the use of dementia-specific assessment tools, may address the gap in education and improve the quality and experience of care (Moore et al 2017).

Despite the aspiration of palliative care for all, specialist services still predominantly provide for people with cancer and struggle to provide equitable services according to need rather than diagnosis. The majority of people in this study were referred to specialist palliative care late in their illness trajectory, limiting the efficacy of interventions, which is consistent with the findings of larger studies (Bennett et al 2016).

There is no standardised trigger for referral to specialist services in the UK. While the FAST scale stage 7c is widely used in USA to prompt such referrals, it seems to be an unreliable predictor of the last six months of life, with possibly more reliable prognostic variables relating to physical decline and reduced nutritional intake (Brown et al 2012).

Pragmatic solutions using different models to combine specialist services with dementia care have been identified. For example, partnerships between Admiral Nursing and palliative care, sharing knowledge and expertise, and embracing dementia as a life-limiting illness (Harrison Dening et al 2017).

Key findings
  • dementia is often said to follow a flat, low trajectory as it progresses, but this underestimates the impact of acute events
  • physical symptoms experienced by people with dementia were under-addressed
  • suitable triggers to prompt consideration of referral to specialist palliative care were missed


This study had 3 key findings (see box above):

Health and social care support for people with dementia and their carers should be more proactive and co-ordinated, preparing for and avoiding crises wherever possible, and more responsive when crises do occur. Such a policy would recognise the complex holistic needs in people with dementia at the end of life.

An effective approach would also consider advance care planning early in the course of dementia in order to focus on the wishes of the individual concerned. In addition, specialist palliative care has a significant role in training and supporting health and social care professionals to provide a holistic and compassionate patient and carer-centred approach to end-of-life care.

Hospices should work more collaboratively and creatively with local services to develop skills and shared models of care that are responsive to the needs of people with dementia and their carers. The result would be to narrow the gap between level of need and services available.


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Dr Jennifer Todd is medical director at Princess Alice Hospice, Esher, Surrey, Elizabeth Reed is research lead at Princess Alice Hospice, Louise Hogh is consultant in elderly care at Kingston Hospital NHS Trust, and Professor Craig Gannon is medical director emeritus at Princess Alice Hospice

Table 1: FAST scale