Dementia is often an insidiously progressive illness that may advance over years. In many cases, families and professionals do not view dementia as a terminal illness and have little knowledge or understanding of the possible causes of death and what to expect as the illness progresses. However, people with dementia who are dying have significant health care needs and there are particular challenges and ethical dilemmas that both families and caregivers encounter.

A palliative care approach is proposed to be of benefit to people with dementia because of its emphasis on supportive care (including support for family). This approach encompasses: quality of life, symptom management, attention to formulating goals of care that guide medical decision-making, creation of a comfortable end-of-life experience and bereavement services.

Life-extending treatments are usually not appropriate. Discussions with the caregivers are central when evaluating an individual’s symptoms in order to focus pharmacotherapy on the most burdensome of these. Optimal drug management could potentially improve the quality of care for people with dementia at the end of life. Consequentially, it is important to revise the therapeutic objectives of each comorbid disease and adapt treatments accordingly – withdrawing medications in a stepwise manner to assess adverse reactions and impact on symptom profile. The withdrawal of acetylcholinesterase inhibitors is however a debatable area and more research is needed to support their discontinuation in late- to end-stage dementia.

It is of particular importance that people with dementia are supported, maintained and cared for until death in the environment of their choice and with the support of family members. Loss of decision-making capacity is a hallmark of dementia, and as in many cases the duration of the illness is prolonged, the supportive care demands placed on family or significant others may escalate over time.

To engage in advance care planning requires the person with dementia and their families to have some insight and understanding of the dementia illness trajectory. But evidence shows that this insight and understanding is generally lacking. Consequently, uncertainty and distress related to decision-making processes in preparation for the death of a person with dementia is often experienced by family members and significant others, and can have a negative impact on bereavement experiences.

Initiation of discussions about death and dying should take place at an early assessment stage, when the person with dementia can participate meaningfully in any discussion about death and dying with their families and caregivers. It is often assumed that ‘surrogate’ (family members or significant others) are fully cognisant of the treatment preferences of the person with dementia but this is not always the position. Shared decision-making with family and health professionals is essential, in order to provide care in a person’s best interests, often for symptomatic relief rather than cure. Surrogate decision-makers may have taken out a Lasting Power of Attorney, or may need to approach the Court of Protection to take on the authority to act on the person’s behalf in relation to health and financial affairs (see Chapter 12).

Challenges faced by families of people with late-stage dementia are unfamiliarity with death and lack of understanding of the natural course of late-stage dementia. An increased level of support may be needed. Historically, families of people with dementia have rarely received comprehensive bereavement services. The nature of bereavement is complex and may be different at various stages as a dementia progresses.

A person with dementia may have up to five (or more) comorbid illnesses that could potentially be the cause of their death; however, there is little information on survival patterns and causes of death for people with dementia. Most studies have shown some evidence that there is lower survival for people with dementia in an institution rather than in the community. At best, research studies have identified risk factors that will contribute to death for specific dementia syndromes (Box 13.1).

The Gold Standards Framework provides clinical prognostic indicators to identify people with dementia who are in need of supportive and palliative care (Box 13.2). These indicators are designed to be used when people may die within the next 6–12 months; however, prognostication in non-cancer patients is not generally precise. Factors usually associated with shorter survival in advanced dementia include severe cognitive impairment, parietal lobe dysfunction, dysphasia, psychotic symptoms, behavioural abnormalities, physical incapacity and poor nutrition.

Mortality and morbidity are significantly increased in the presence of other illnesses such as pneumonia (possibly as a result of compromised swallowing), sepsis as a result of other infections (e.g. pressure ulcers and urinary tract infections (UTIs)), cachexia, dehydration, cardiac disease and cerebral vascular disease. Mortality in the 6 months after the development of swallowing and feeding problems is significantly increased.