Certain conversations in healthcare, or in life generally, are difficult. Death has come to be an event I can expect again myself, personally, having had a cardiac arrest myself in 2007. From that time, I believe that anything can happen at any time. An unfortunate conclusion I drew from my time in medicine was that nasty things happened to nice people.
Receiving a formal diagnosis of dementia, as Richard Taylor, living with dementia, says, does not bring you any closer to the day when you would have died.
The change in emphasis to ‘living well with dementia’ is partly to get round the notion of preparing for death. Likewise, residential care settings can be unappealing for some, taking on the aura of a departure lounge for the journey ending ultimately in death. Dementia poses particular issues for end of life planning, and the general impression in policy that these issues have been generally under-addressed thus far.
The recently published ‘Prime Minister Dementia Vision 2020‘ even included a section on it.
We know that dementia is a progressive condition, but it is not always easy for care staff and family carers to tell when the end of life is approaching. A lack of understanding about dementia has been identified as a barrier to providing excellent end-of-life care for people with dementia. You can of course attempt to do something about this, as indeed the recent Government initiatives have tried through workforce training initiatives, and giving information sessions for the general public through ‘Dementia Friends’. Specifically, there is also a lack of research on the training of care staff to recognise and respond to the need for palliative care. the use of comfort. This means that people with dementia sometimes do not receive the end of life care they would have ideally wanted.
The waiting for death component as an inevitability is bound to cause stress, but it is hoped that this inevitability of death will not deter individuals living with dementia from trying to lead lives post diagnosis. Often, people who have received a diagnosis of dementia find themselves totally unsupported. The natural course of the dementias can often be rather protracted and all too unpredictable, with progressive physical and cognitive losses typically over many months and years. The nature of disease progression makes death at home relatively rare, and death in a specialist palliative care institution or hospice particularly rare.
The number of people living and dying with dementia is increasing. The proportion of people with dementia will increase rapidly during the coming decades, and end-of-life practices in dementia care concern a significant number of old people and care professionals worldwide. Person centred approaches to dementia care assumes that people with dementia can actively participate in decisions about their lives, and this is generally consistent with what policy is trying to aim for folllowing diagnosis: a person-centred approach.
It is a generally accepted belief that people wish to die peacefully. Nevertheless, literature on ‘dying peacefully’ is rather limited and a bit noncommittal. The concept of ‘dying peacefully’ is broad, and it is often referred to as ‘tranquillity’, which may be connected to various aspects of emotional and spiritual well-being, such as feeling close to loved ones and feeling deep inner harmony. Providing quality end-of-life care for individuals in residential care settings with dementia is a growing concern.
The statistics are actually quite staggering. In some countries, one-third to one-half of people with dementia live in residential or nursing homes. Three-quarters (76%) of all deaths occur in hospitals in Japan, probably the highest proportion in the world. In contrast, only 4% occur in nursing homes. But this generally is not that representative. Across Europe, most people die at an older age, which makes listening to their preferences regarding care, treatment and place of care and death especially important. A shift from hospital to care home deaths has been observed in Belgium and the Netherlands from 1998 to 2007, especially for patients with dementia. Dying is part of care home life, and an important aspect of the overall quality of care provided. Here at home, both service provision and research tend to consider care homes as unique environments for the elderly. We do not know whether individuals with young onset dementia feel comfortable being in residential care settings with much older inhabitants; it would be dangerous to make assumptions here as elsewhere in policy.
Dying is not an unexpected outcome following a move into a care home, although often not acknowledged at the time of entry. In the UK, the generic term ‘care home’ encompasses the provision of two types of care: nursing care and/or personal care. Care homes for older adults are an important setting for end-of-life care provision. In the UK there are an estimated 15,700 care homes providing nursing care and/or personal care to more than 400,000 older people with a range of different needs in England and Wales. In fact, the majority of deaths of people with dementia occur in institutional settings such as care homes and hospitals, where unmet needs and concerns about care quality appear most pervasive.
Residential and nursing care homes, along with other long-term care settings have increasingly become places where people spend the final stages of their lives. Care homes are the place of abode until their death for many older people, and how older people die in this care setting raises particular challenges. An understanding of where people die is essential to develop health policies aimed at improving end of life care. In addition, place of death can be an important indicator of the quality of end of life care. National policy is clear that people should receive good end-of-life care irrespective of the condition with which they die, yet evidence suggests that people with dementia and their families receive poor-quality care in the final stages of their lives.
The place of death has also been recommended as a quality indicator of palliative care; in the UK death in the usual place of residence (which may be a care home) is a “key performance indicator” for those providing end of life care. However, remaining in a familiar care environment is not always possible, and end-of-life care transitions, particularly transfers from long-term care facilities to hospitals, are common in this patient group.
In health and social care, the palliative care speciality has an acknowledged expertise in the management of dying across all ages. The term ‘palliative care’ is often used to describe care for people who are approaching the end of life. The World Health Organisation (WHO) defines palliative care as:
‘…an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’
For those who are living at home or in care homes, definitions of end-of-life care are often imprecise, and it is unclear whether generalist palliative care frameworks address the needs of people with dementia. In England, despite recent initiatives to improve this population’s access to palliative care services, the experience of the older person is largely unknown. The “Gold Standards Framework in Care Homes” was a system-based organisational approach, developed in 2004, to optimise the end-of-life care provided by generalists within a care home context. It is argued that failure to recognise dementia as a terminal condition may preclude access to palliative care. Reported problems include under-diagnosis and poor treatment of pain, painful and unnecessary investigations, and inappropriate use of aggressive treatments.
There is still relatively little research on the provision of specialist palliative care support and the integration of services for people living and dying in care homes. However, there is no single universally agreed definition of end of life care. In some contexts it is used to describe the care given in the last few months of a person’s life or when their death is no longer unexpected, whereas in others it refers to the final few hours of life or even death itself.
According to the General Medical Council (GMC), the regulator of doctors, people are approaching the end of their life when they are likely to die within 12 months.
End of life care and dementia care are areas of growing prominence in health and social care policy, and there have been a number of government initiatives in England aimed at improving both end of life care and support for people with dementia. Professional and policy guidance on care for people with dementia nearing the end of life do indeed emphasise the importance of advance care planning, co-ordinated working between health and social care, and the adaptation of palliative care frameworks and tools for people with long term conditions. Reviews of evidence to date have drawn heavily on evidence from settings where there is access to medical and specialist palliative care services for this population. Generalist palliative care frameworks may increase awareness of the issues for people with dementia.
Enabling people to make genuine choices about the care they receive towards the end of life is a well recognised value in palliative care. Despite some encouraging trends from The Netherlands and the U.S. regarding improved symptom management in dementia, improvement of end-of-life care for dementia can be slow to advance. Thee provision of high-quality end-of-life care for nursing home residents with dementia is essential. However, the literature reports numerous shortcomings in the end-of-life care for dementia, psychotropic drugs and poor decision-making in the last month of life of nursing home residents with dementia.
As the dementia time course nears its end, a number of treatment decisions may be considered including the use of resuscitation, hospitalisation, artificial nutrition and hydration, antibiotics, diagnostic tests, and analgesics. The universal goal of care for advanced dementia is to maximise comfort and treatments and interventions that will address this must be a priority. Determining pain and discomfort in persons with dementia generally presents a challenge, yet every effort should be made to determine the possible cause of distress (e.g., position, incontinence, pain). Experts generally agree that in end-of-life care, the emphasis should be on comfort, pain and other symptom control, continuity of care, and a familiar living environment with familiar people. Pain and shortness of breath are the most prevalent symptoms at some point in the process of dementia, with a peak when death approaches. Symptom control is an important factor in maintaining or improving quality of life in end-of-life care. So far, treatment has been mostly empirical or based on general palliative care guidelines, which are not tailored to dementia.
In dementia, hospitalisation of people nearing the end of their lives can have a profound detrimental impact, with patients experiencing problems such as pressure sores, worsening of behavioural problems, and increased confusion. Reducing the use of hospital-based care in advanced dementia has also potential economic benefits. Transferred residents are indeed at worse health; higher risk of functional decline and mortality and many are at higher risk of delirium, anorexia, incontinence and falls. High rates of burdensome transitions are also related to other indicators of poor end-of-life care, such as tube feeding which may result in aspiration pneumonia, intensive care unit admissions, decubitus ulcer and late hospice enrolment. Burdensome hospital transitions of nursing home residents with dementia and stays in intensive care units are not unusual.
Good quality palliative care in care homes, rather, is reflected by a number of markers. These include a plan of action for end-of-life care, the establishment of mechanisms to discuss and record the preferences of residents approaching end of life, ongoing review of a resident’s need for end-of-life care, and access to staff training. Investment in training and facilitation for care home staff in end of life care has demonstrated the potential and value of structured approaches that encourage advance care planning, reduce unplanned admissions to hospital and increase staff confidence in their ability to provide end of life care. The knowledge, experience and perspectives of care home managers and staff and older people residing in care homes and their family carers has yet to be fully integrated into the initiatives.
There are barriers to appropriate use of palliative care for persons with advanced dementia including nursing home residents. Too often, death is looked upon as a medical failure instead of as a part of life. Family members may not perceive dementia as a terminal illness, perhaps due to its protracted and yet unpredictable course. There is a further difficulty in recognising “possible dying” and identified triggers that can stimulate end-of-life care discussions, such as health status decline of older adults. Lack of knowledge regarding the person with dementia’s wishes is also likely. However, family carers tend to wish to express strong personal needs during this period: they appear to want frequent contact with staff, they seek also empathy, reassurance, understanding, guidance and communication. Carers particularly feel validated when values and beliefs were shared by professionals and fear, anger and guilt when they were not.
As people with dementia gradually lose their ability to make informed decision themselves, family carers will play a more prominent role in making decisions about medical treatment and care. To enable the provision of appropriate care for people with dementia who are incapable of decision-making themselves, family carers should be aware of the medical status of their relative. Good communication with staff is highly valued by family carers, but, overall, staff and family members may find it difficult to openly discuss death and dying, and staff may not feel confident answering specific questions about end-of-life care. Making treatment decisions on behalf of another person inevitably places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Poor communication about nursing homes is a barrier to making difficult choices about care for their loved ones with advanced dementia, including resuscitation, hospital transfer, feeding options, and treatment of infection.
People with dementia may be willing and able to discuss preferences even when they are no longer considered to have the capacity to make advance decisions in their legal form. Older people may wish to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this is especially relevant in dementia, where patients experience an extended period of mental incapacity but may retain physical health. More recently the broader concept of advance care planning (ACP), a multistage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care has been introduced. ACP is a way to improve the quality of end-of-life care and to provide person-centred care by focusing on individual preferences. ACP is especially important for people with dementia, as this disease is characterised by the gradual loss of cognitive abilities. Therefore, ACP discussions with people with dementia should start when they still have sufficient communicative and cognitive abilities to express personal preferences. Where wishes are written, relatives report lower levels of emotional distress at the end of life.
Advance care planning aims to discuss and prepare care choices for the stage in life when people no longer have the capacity to make decisions. When a person moves into a care home, there should be opportunities to discuss advance care plans sensitively at a carefully chosen time or when the moment arises. However, it is also important to respect the wishes of people who do not want to specify in advance what end of life care they wish to receive. In summary, advance care plans, or similar expressions of views, are important ways in which people with dementia can express their wishes about end of life care. Currently it is arguable that not enough is known about how to implement these wishes effectively, especially where there is disagreement between a person’s advance care wishes and the views of family members or professionals.
To date, research has largely focused on describing the experience of patients with advanced dementia and the care they receive. This work has delineated abundant opportunities for improvement. Addressing those opportunities must be the overarching objective for advanced dementia research in the coming decade.
So, end of life care for people living with dementia is potentially complex, but does demand our attention. Whether you’re a politician, a person living with dementia, or a caregiver, or someone completely different, not talking about the complexities won’t make the issues go away.