The population of Europe and other developed nations is ageing. For example, by 2020, in the UK and the US, one in four people will be aged over 60, and in Japan this rises to one third. This has occurred secondary to an ‘epidemiological transition’: the number of deaths in early life from infectious disease has decreased (Omran, 1971), primary prevention of other pathologies such as cardiovascular disease is becoming more successful, the treatment and survival rates of some cancers is improving, and thus a higher proportion of the world’s population is living to old age. This has led to an increase in the numbers of people living long enough to develop illnesses associated with old age, in particular neurodegenerative diseases such as dementia. These multiple comorbidities will have cumulative effects on function, quality of life, and care needs.
In the UK and other developed countries there will be a steady increase in the number of deaths, and in the proportion of those who die over the age of 85 years (Gomes and Higginson, 2008). Despite the fact that the vast majority of deaths occur in adults over the age of 65 years, there is widespread evidence that older people have inequitable access to good end of life care, and for people with mental health problems such as chronic schizophrenia or with neurodegenerative diseases such as dementia, there are further barriers to adequately meeting their needs (Davies and Higginson, 2004; Sampson et al., 2006).
The Epidemiology of Advanced Dementia and Frailty
Worldwide prevalence figures for dementia will rise steeply; currently an estimated 24.3 million people worldwide have dementia, but the number affected will double every 20 years, to 81.1 million in 2040 (Ferri et al., 2005). The prevalence of dementia increases with age, affecting 6% of those aged 75–79 years and a third of people over the age of 95 (Knapp and Privette, 2007). Thus increasing numbers of people will die whilst suffering from dementia. Estimates from the UK Medical Research Council–Cognitive Function and Ageing Studies (MRC–CFAS) project, a large multicentre study looking at the health and cognitive function of 13,000 older people, suggest that people who died between the ages of 65 and 69 years had a 6% risk of dying with dementia, rising to a 58% risk of dying with dementia in those over 95 years. In the UK, one in three people over the age of 65 will die whilst affected by dementia (Brayne et al., 2006).
Frailty has been defined as:
an aggregate expression of risk resulting from age- or disease-associated physiologic accumulation of subthreshold decrements affecting multiple physiologic systems resulting in adverse health outcomes.
It also becomes more common with increasing age; by the age of 90 years, 32% of people will be frail (Gavrilov and Gavrilova, 2001). The older population has a higher proportion of women and both dementia and frailty are more common in females (Walston and Fried, 1999).
Frailty and dementia are multifactorial in origin and share some common aetiological pathways. Smoking, obesity, lack of physical activity, and depression have been linked to the development of both frailty and dementia (Woods et al., 2005; Ownby et al., 2006; Peters et al., 2008; Hamer and Chida, 2009; Kerwin et al., 2010). Thus frailty and dementia have been conceptualized as final common pathways resulting from cumulative exposures over a number of years (Neale et al., 2001).
Both dementia and frailty have an adverse impact on a range of outcomes. People with dementia are at higher risk of acute hospital admission (Mukadam and Sampson, 2011), falls (Myers et al., 1991), and being placed in care homes—crisis or transition points at which the diagnosis is often made for the first time. Frailty also increases the risk of emergency hospital admission, overnight hospital stays (Wagner et al., 2006), falls (Fried et al., 2001), and institutionalization. These outcomes are independent of physical comorbidity and other potential confounders such as age and gender (Avila-Funes et al., 2009).
Dementia and frailty are life-limiting conditions
Despite the impact that dementia and frailty have on older people and their families, they have not traditionally been conceptualized as ‘terminal’ or ‘life-limiting’ syndromes. For example, care home medical and nursing staff consistently overestimate prognosis in advanced dementia. In one study of nursing home carers and physicians, at nursing home admission only 1.1% of residents were perceived to have life-expectancy of less than 6 months; however, 71% died within that period (Mitchell et al., 2004). The median length of stay in UK nursing homes, where the majority of residents will have moderate or severe dementia, is 18 months. With a median survival time of 1.3 years, advanced dementia (as defined by a Functional Assessment Staging Scale (FAST) score of 7c and above) is associated with a life-expectancy similar to that of well-recognized terminal diseases such as metastatic breast cancer (Mitchell et al., 2009).
A recent UK population study gave a median survival time from diagnosis of dementia to death of 4.1 years (Xie et al., 2008); this is strongly influenced by age, with those aged 65–69 years surviving for a median 10.7 years, and those aged 90 years and above surviving for 3.8 years (Xie, et al., 2008). As would be expected, older people defined as being frail also have a significantly increased risk of death (Klein et al., 2005).
Identifying when frail older people with dementia are reaching the end of their life can be challenging. Numerous studies have attempted to identify prognostic indicators or indices that may guide physicians to adopting a more palliative approach to care, but these tools are more reliable at identifying people with dementia at low risk of dying rather than those at higher risk of death (van der Steen et al., 2005). Clinical judgement, discussion with families and carers, and taking the opportunity to reassess or shift the goals of management towards palliative care at times of intercurrent illness or transition may be a more practical and reliable approach (van der Steen, 2010).
For example, acute physical illness requiring emergency hospital admission, such as pneumonia and urinary tract infections, may be an indicator of imminent death in people with advanced dementia (Morrison and Siu, 2000a; Mitchell et al., 2009; Sampson et al., 2009a). This population also has markedly increased 6-month mortality after hip fracture (55%) and pneumonia (53%), compared to 12% and 13% in cognitively intact patients (Morrison and Siu, 2000a). Shorter-term mortality is also very poor, with 24% of those with moderate or severe dementia dying after acute unplanned medical admissions, compared to 7.5% of those who did not have dementia (Sampson et al., 2009a).
However, there is little evidence that many active medical interventions, such as artificial hydration and nutrition or hospital admission, prolong or improve the quality of life in people with dementia (Sampson et al., 2009b; van der Steen, 2010), and there has been recent interest in how a palliative approach may be beneficial for frail older people with advanced dementia.
What Is Palliative Care?
The World Health Organization defines palliative care as:
an approach that improves the quality of life of patients and their families facing the problems 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.
‘End of life care’ may be used synonymously with ‘palliative care’, particularly in the US. Its use is favoured because palliative care is sometimes associated only with cancer, whereas end of life care refers to all patients with life-limiting illnesses. In European countries, end of life care is often used to describe the care given during the last few hours or days of life,
The European Association of Palliative Care (EAPC) has recently published a consensus statement attempting to define the principles of practice. All definitions share a common philosophy of care, which is to take a holistic approach, valuing autonomy of patients and their families, with a focus on dignity, a collaborative relationship between healthcare professionals, patients and their families, good communication, and a central goal to maintain the quality of life. These are, of course, all characteristics required by professionals working in any mental health setting. It is also important to note that end of life care ‘seeks neither to hasten death, nor to postpone it’ (Radbruch et al., 2009).
For the purposes of this chapter we will be focusing mainly on end of life care of older people with advanced dementia; this is where the focus of policy, research, and clinical provision has most recently been directed.
The Clinical Picture of Advanced Dementia
There are no operationalized clinical criteria for advanced dementia, but it has been suggested that it can be defined as a FASTlevel of 7 and above (Reisberg, 1988): the person with dementia cannot dress him- or herself, is doubly incontinent, and speaks at most only a few words.
In contrast with the early and middle stages of dementia, the clinical features of advanced dementia are less well characterized and researched. People with advanced dementia suffer a range of symptoms, similar to those found in the terminal stages of cancer, e.g. pain and dyspnoea. Pressure sores, agitation, and eating problems (i.e. difficulty with swallowing or loss of appetite) are very common as the end of life approaches (see Table 28.1).
Table 28.1 Prevalence of symptoms (percentage) in nursing home residents with advanced dementia
Mitchell et al. (2009) Proportion of patients with symptoms 18 months prior to death (prospective study) n= 323
Black et al. (2006) Proportion of patients with life expectancy of 6 months (prospective study) n= 126
Di Giulio et al. (2008) Proportion of patients in the last 30 days of life (retrospective study) n= 141
Aminoff and Adunsky (2005) Proportion of patients in the last week of life (prospective study) n= 71
A retrospective study comparing symptoms experienced in the last year of life by 170 people with dementia compared to 1513 cancer patients showed that the symptom burden between the two groups was comparable; in particular, 64% of dementia patients experienced pain and 57% had loss of appetite. The healthcare needs of both groups were also similar (McCarthy et al., 1997). The careful management of these specific symptoms is vital in providing a holistic approach to end of life care for people with dementia.
Pain is common in people with advanced dementia and is often underdetected and undertreated (Scherder et al., 2009). Retrospective interviews with relatives and carers indicate that significantly more dementia patients are reported to experience pain in the last 6 months of life compared to those with cancer (75% vs. 60%) (McCarthy et al., 1997), but pain control is often inadequate. In patients with fractured neck of femur, those with cognitive impairment were prescribed a third as much analgesia as cognitively intact controls (Morrison and Siu, 2000b). There is no consistent evidence to suggest that pain experience is less intense, but people with advanced dementia will have difficulties in communicating that they are in pain and interpreting pain signals. This often manifests as behavioural change such as agitation, distress, social withdrawal, depression, or resistive behaviour (Scherder et al., 2009).
The ‘gold standard’ for pain assessment is self-reporting. Despite widely held beliefs to the contrary, many patients with moderate to severe dementia can report pain reliably (Zwakhalen et al., 2006). In those with communication difficulties it may be necessary to use direct observation or validated observational pain scales such as the Abbey Tool (Abbey et al., 2004). The assessment of pain in advanced dementia is, however, complex and it has been suggested that there is no evidence that pain produces any unique features that may not be caused by other sources of distress (Regnard et al., 2003); and thus tools such as the Disability Distress Assessment Tool (DiSDAT) may be more appropriate (Regnard et al., 2007).
Managing pain in a person with advanced dementia requires careful assessment for possible underlying causes. This should include clinical examination, observation of behaviours (both at rest and during movement), and discussion with family members or staff who know the person well. In some cases, response to a trial of analgesic may in itself be a diagnostic tool (Herr et al., 2006). The aetiology of pain may be acute and may, for example, be associated with urinary retention, constipation (Kovach et al., 2006), myocardial infarction, deep vein thrombosis, or acute infection. Common chronic causes of pain in people with advanced dementia include pressure sores, undetected fractures, poor dentition, awkward positioning in chair or bed, and arthritis (Davis and Srivastava, 2003).
Treating pain in this population requires a stepped approach (American Geriatric Society Panel, 1998). Depending on the cause, nonpharmacological interventions may be helpful, particularly where there is a musculoskeletal aetiology. This may include repositioning, provision of optimal seating or specialist beds, physiotherapy, massage, heat, or cold. Simple analgesia such as paracetamol and nonsteroidal inflammatory drugs can be very effective. The key to achieving a good result is regular prescribing; as-required medication is often not given as people with advanced dementia may not report they are in pain or request painkillers. If simple analgesics are ineffective then stronger analgesia such as opioids should be considered. Side effects such as delirium, constipation, and sedation may occur, but in practice these can be managed. An important recent study (Husebo et al., 2011) demonstrated how this approach to the management of pain significantly reduced agitation in residents of nursing homes with moderate to severe dementia. Regular paracetamol was effective in 63% of participants, and of the 25% who received opioids only 2% had these discontinued because of side effects.
Behavioural and psychological symptoms of dementia
Behavioural and psychological symptoms of dementia (BPSD) are common in dementia, affecting 90% of people at some time during the course of their illness. They are extremely distressing both for people with dementia and their family and carers, and also a strong predictor of institutionalization to nursing or residential homes (Steele et al., 1990). Different BPSD tend to emerge at different stages of the illness, e.g. mood disorders and depression are noted earlier in the disease course and psychotic symptoms (hallucinations and delusions) are more common in the moderate stages. Wandering and agitation tend to be the most enduring BPSD. In the advanced stages of dementia, over half of patients remain agitated and distressed (Mitchell et al., 2009). The management of these symptoms is complex and requires a structured approach, using a range of therapeutic approaches. Difficult behaviours such as aggression and resistiveness to care may be indicators of unmet needs, such as undetected or untreated pain, delirium, or infection. Patients therefore require a full assessment, which can be challenging in advanced dementia when verbal communication is limited. Basic aspects of personal care, such as providing glasses or hearing aids, should be considered first. Environmental modifications, such as limiting noise or providing outside space or gardens where people can walk, can reduce agitation. Psychological interventions, e.g. simple ‘ABC’ analysis (documentation of the Antecedents of the behaviour, the Behavioural disturbance, and the Consequences of the behaviour) can reveal patterns and triggers for a particular problem, and are also very effective (Kovach et al., 2006; Testad et al., 2010), and drugs should be used as a last resort. Antipsychotic medications both typical and atypical can cause parkinsonism, prolongation of the QT interval, and increase the risk of stroke and death (Schneider et al., 2005).
Eating and swallowing
People with advanced dementia often develop swallowing difficulties. Two methods of enteral tube feeding are used: a nasogastric tube (a tube that is passed through the nose and into the stomach) or via a percutaneous endoscopic gastrostomy (PEG) (directly through the abdominal wall into the stomach). There have been no randomized controlled trials of these interventions in people with advanced dementia. A recent Cochrane Review (Sampson et al., 2009b) found inconclusive evidence that enteral tube feeding provides any benefit in dementia patients in terms of survival time, mortality risk, nutritional parameters, and improvement or reduced incidence of pressure ulcers. There have been no studies on the effect of these interventions on quality of life. Enteral tube feeding may increase pulmonary secretions, incontinence, mortality, and morbidity. PEG is an invasive surgical procedure with significant postoperative risks, including aspiration pneumonia, oesophageal perforation, migration of the tube, haemorrhage, and wound infection. The decision to use enteral tube feeding is emotive and influenced by complex ethical issues, clinical need, local practice, physician and carer preference, and whether there is an advance directive or care plan in place. Clinicians may feel pressurized by institutional (Lopez et al., 2010), societal, or local laws to intervene. For example, in the US, Illinois requires a physician to seek a court order to withhold or withdraw tube feeding but no other states do. Ethical considerations include whether life in advanced dementia should be artificially prolonged and what is considered to constitute ‘euthanasia’, i.e. the difficult issue that by withholding food and fluids death will be hastened. It has been argued that the absence of evidence demonstrating a benefit of tube feeding does not mean that it is inappropriate in all patients with advanced dementia and that each individual deserves a holistic assessment by a specialist in swallowing; all appropriate interventions should be considered including the option of a gastrostomy (Regnard et al., 2010). Some ethicists suggest that artificial nutrition and hydration are medical treatments that can legitimately be withheld if their risks, judged according to the patient’s values, outweigh their benefits (Gillick, 2000); however, this implies that values are known or documented and this is often not the case.
Infections and pneumonia
Pneumonia and other infections, especially of the urinary tract, are common in advanced dementia. Over 18 months, 53% of nursing home residents with advanced dementia will have a febrile episode, and 41% will have pneumonia (Mitchell et al., 2009). These will be the immediate cause of death in up to 71% of cases (Burns et al., 1990). People with advanced dementia are often immobile, bed bound, at increased risk of aspiration, and may have impaired immunological function. The use of antibiotics to treat fevers and recurrent infections is one of the most controversial issues in this field. Fabiszewski et al. (1990) demonstrated no difference in mortality between people receiving antibiotics and those receiving only ‘palliative’ care. In a cohort of Dutch nursing home patients, van der Steen et al. (2002) found that patients treated with antibiotics survived for longer (27% died compared to 90% of those who did not have antibiotics); however, this may have been related to the fact that antibiotics were withheld from patients whom physicians believed had more severe dementia. Some research has suggested that withholding antibiotics increases the level of discomfort (van der Steen et al., 2009), but it has also been argued that antibiotics might delay death, leaving the patient exposed to the risk of further pain and suffering and prolonging the dying phase. In this situation, adequate symptomatic control through the use of analgesia may be more appropriate.
Many recent national and international palliative care policies have focused on how best to provide people with the opportunity to die in a place of their choice (Department of Health, 2008). International population surveys have demonstrated how over two-thirds of people say that they would prefer to die at home (Gomes et al., 2012). However, in western populations over the last hundred years there has been a large shift away from deaths at home to deaths in hospitals and care facilities. For example, in the UK, between 1974 and 2003 the proportion of home deaths fell from 31% to 18% overall. This occurred at an even higher rate for people aged 65 and over, women, and people dying from noncancer related causes (Gomes and Higginson, 2008). Concurrently, the proportion of older people dying in long-term care facilities such as residential and nursing homes has increased across Europe and the US, where 40% of deaths occur in long-term care facilities.
When frail older people with dementia are moved to a care home they frequently experience multiple losses: physical, mental, social, and spiritual. Although death may not necessarily be imminent, residents of care homes are highly likely to die there, making these settings where palliative care is needed (Cartwright, 2002; Parker-Oliver et al., 2004; Froggatt et al., 2006). A number of barriers have been identified that may challenge the provision of good quality palliative care in these settings. These include high rates of staff turnover, lack of access to primary care medical support and specialist palliative care resources when required, and fear of censure by regulatory authorities if deaths occur in the care home (Harrison Dening et al., 2012). In the UK, medical support to care homes is variable and concerns have been raised when acute illness occurs at night and on-call doctors may not have the information necessary to make the decision that a resident is for palliative care and not active intervention. This can lead to the distressing situation where a resident is admitted to the acute hospital and dies there. A related issue is that of anticipatory prescribing. For example, care homes may not hold drugs, particularly opiates, which are commonly held by palliative care teams and hospices. The funding of long-term care and palliative care varies widely between different countries. In the US, there is a focus on ‘hospice appropriateness’, whereby Health Management Organizations will fund palliative care for people with dementia, once it has been agreed that they have a likely survival time of less than 6 months. In the Netherlands, care homes are served by specialist nursing home physicians, and therefore much palliative care is given ‘in house’.
It is often stated that people with dementia are ‘denied’ access to hospices; less than 1% of hospice patients in Europe have a neurological diagnosis (Davies and Higginson, 2004), and in the US, less than 7% of hospice patients have a primary diagnosis of dementia (Jennings, 2003). The reasons for this are complex and related to many of the issues described above, e.g. the fact that dementia is not perceived to be a terminal illness and concerns that hospice staff will not be able to manage BPSD (McCarty and Volicer, 2009; Sanders and Swails, 2009). Patients with dementia are also less likely to be referred to palliative care services, and in many health systems access to hospices is dependent on recommendations from these services. It has been argued that hospices provide ‘specialist’ palliative care and that they should rightly focus on cases of complex need—most of the symptoms experienced by people with dementia at the end of life, such as pain and difficulties with swallowing, do not require specialist intervention but good generalist care.
The Role of Person-Centred Care and Spirituality at the End of Life
What it is to be a person is central to our understanding of person- centred care. Person-centred care is now a widely acknowledged basis for dementia care delivery and is a term that is synonymous with treating people as individuals, respecting their rights as a person, and (from a professional carer perspective) in building therapeutic relationships (McCormack and McCance, 2010).
Kitwood, a noted leader in the movement for person-centred care in dementia, extended the concept of person-centred care (see Box 28.1) to consider personhood and the status of being a person, and developed a definition of personhood: ‘A standing or status that is bestowed upon one human being by others, in the context of relationship and social being’ (Kitwood, 1997). This established the concept of person-centred care within relationships with others.
People with dementia, particularly those in the advanced stages, are reportedly often denied care that is ‘person-centred’, with the suggestion they may be classified as already ‘dead’ (Post, 2006). Post states that, due to the lack of empowering capacities, people with advanced dementia may be seen as ‘nonpersons’. The ethical and philosophical debate on the concepts of self and personhood draws together the central issues of both dignity and spirituality. There is growing interest in spirituality and spiritual care, which are seen increasingly as essential components in person-centred care and quality of life of people with dementia, especially towards the end of life when capacity may be lost. The drive to understand better elements of spirituality is also seen in the delivery of palliative and end of life care. A review of spiritual care (Holloway et al., 2011) commissioned to support the implementation of the End of Life Care Strategy (DH, 2008) found spirituality of particular concern within the nursing literature, though the largest body of material was more concerned with its assessment and much less so on specific interventions. In dementia care, spirituality is bound up in the concept of person-centred care and embodies what it is to be an individual with a life history, personality, likes, dislikes, etc. However, acknowledgement and assessment of spiritual needs may be neglected in people dying with advanced dementia (Sampson et al., 2006) before delivery of any related intervention is even considered. Dementia care policy and strategy has largely been driven by the principles of living well with dementia; however, the growing recognition and concern of the often poor end of life experiences for people with dementia has led to a policy shift (National End of Life Care Programme, 2010; National Institute for Health and Clinical Excellence and National End of Life Care Programme, 2010) that recognizes the need for the principles of high quality care to encompass dying with dementia.
Advance Care Planning
The fear of not being seen as a ‘whole person’ or cared for in a person-centred way has contributed to the anxieties that people have about their future health. For example, a recent BUPA survey found that, when asked what health worries they were most concerned about when they got older, more people worried about developing dementia (58%) than were concerned about getting cancer (47%) or having a heart attack (47%) (Fernández and Forder, 2010). The experiences of people with dementia are starting to have a positive influence on our understanding of person-centred care from the perspective of the person with dementia. Bryden (2005), based on her personal experience as a person with dementia, maintains that people with dementia should take the opportunities to explore with other people more existential issues about life and death, while they still retain the capacity to plan their future care.
Advance care planning (ACP) is understood in a variety of different ways. The term is often used without definition or explanation and different emphases are placed upon the different elements of the care planning (Henry and Seymour, 2007). ACP usually involves a process of discussing and recording priorities and wishes for future care and treatment between individuals and their health and/or social care providers. It attempts to anticipate the future deterioration of a person’s condition so that when a person is no longer able to communicate, for whatever reason, wishes and preferences that have been recorded earlier can be met (Froggatt et al., 2008).
In contrast to those with cancer and other advanced chronic disease, people with dementia may have profound cognitive impairment and lack the capacity required to make decisions about their care and treatment. People with dementia are significantly less likely to have an ACP compared to those with cancer, although uptake of the process in cancer remains variable (Mitchell et al., 2004). Ideally, ACP should be attempted in the earlier stages of dementia when a person is still competent to make decisions. An MMSE score of 18–20 appears to be a consistent threshold score required to make an ACP (Fazel et al., 1999; Gregory et al., 2007). Below this threshold, individuals appear more likely to opt for life-sustaining treatments (Fazel et al., 2000), but as dementia progresses there is increased caregiver involvement in decision-making (Hirschman et al., 2004). In current UK clinical practice, it remains rare for a person with advanced dementia to have an ACP, while little is known about how ACP may benefit people with dementia and their carers (Harrison Dening et al., 2011).
Advance care planning and decisions about life-sustaining treatment
Professionals and family carers often anticipate an adverse reaction to pursuing ACP with the person with dementia, but this is not necessarily the case. Finucane et al. (1991) found that such concerns in family carers were unfounded, and that the person with dementia showed no distress either before or after ACP discussions. Carer attitudes may influence the likelihood of people with dementia being exposed to aggressive treatments at end of life. Mezey et al. (2000) found that carers with a greater sense of burden were more likely to consent to life-sustaining treatment. Fazel et al. (2000) found that people with dementia were more likely to make decisions that were impulsive or opt for life-sustaining interventions than controls, but Finucane et al. (1991) found that people with dementia were more likely to refuse life-sustaining therapy as they became more cognitively impaired.
Family carers and decision-making
Decision-making for people with dementia at the end of life may be fraught with problems, with prompts for discussions about ACP perhaps triggered by a medical event, transitions and changes to the living situation, or a hospital admission for the person with dementia. In the absence of any defined ACP, decision-making often falls to family carers, with increasing caregiver ‘burden’ being a significant predictor of caregiver-dominated decision-making (Hirschman et al., 2004). Feelings such as guilt and a sense of failure when the person with dementia goes into long-term care, together with a lack of information on the disease and its prognosis, leave family carers unprepared to make effective decisions about end of life care for their relative with dementia (Forbes et al., 2000; Harrison Dening et al., 2012).
A priority of UK government policy is to improve the diagnosis rates of dementia (Department of Health, 2009). However, of equal importance at this time must be supporting people with dementia to consider their end of life care preferences and choices whilst they still have the cognition, capacity, and language to do so. Professionals often find this a difficult area to address. Studies show that there is inadequate preparation of both people with dementia and their carers for future care issues and related decisions, with some not engaging in ACP discussions at all (Cavalieri et al., 2002). Despite agreement on many aspects of end of life decision-making, physicians, nurses, and relatives hold different views arising from their religious beliefs, perspectives of the patient, and care responsibilities (Rurup et al., 2006). Where ACP do exist, relatives often attach great importance to them and believe they have to be followed, whereas with the widespread use of the Mental Capacity Act 2005, professionals know that only certain types of ACP documents have any legal standing (Rurup et al., 2006).
Advance care planning process and tools
ACP tools are emerging, with little evidence as yet for any improvement in associated outcomes for people with dementia (Harrison Dening et al., 2011). As part of a wider study in Australia, Caplan et al., (2006) used an ACP tool (Molloy, 2005) as part of a programme to reduce acute hospital interventions. Education and ACP led to a reduction in emergency calls, decreased hospital admissions, and a decrease in mortality compared with homes in the control group.
In the UK, the Mental Capacity Act 2005 provides a legal framework for the ACP process. The Act gives competent adults in England and Wales the legal right to refuse treatment (i.e. artificial feeding and resuscitation) through the writing of an ‘advance decision’. People can also make an ‘advance statement’ that reflects their general beliefs and personal values about the sort of care they would like to receive in the future.
Lasting Powers of Attorney (LPA) were also introduced through the UK Mental Capacity Act 2005 and enable the appointment of an attorney to make proxy decisions when the person with dementia no longer has the capacity to do so. A ‘Personal Welfare’ LPA allows the attorney to give or refuse consent to medical treatment, if such preferences have been expressed in the document.
Due to the advancing cognitive difficulties of the person with dementia, nurses and allied healthcare professionals must ensure they communicate with a main carer(s) in addition to the person with dementia in order that appropriate care and support is given. This can give rise to ethical and legal challenges, such as receipt of third party information, disclosure of confidential health information, consideration of the person with dementia’s capacity for decision-making, and potential disagreements among family members on the best interests of the person with dementia, for example. This demands that dementia care professionals should be aware of the legal and ethical issues involved in ACP, as well as developing the skills required to embark on such difficult conversations.
The Role of Nursing Care and Allied Health Professionals
Dementia affects the whole family, and people close to the person with dementia find themselves providing increasing amounts of care and support as the disease progresses. Hence, care delivered is required to be mindful of the whole family unit and the relationships therein. Various health and social care professionals have a role in supporting palliative and end of life care for people with dementia. For example, occupational therapists may provide assessment of the home (or usual place of care) environment for equipment and adaptation needs; social care workers may provide assessment and provision of personal care and domestic support needs; district nurses may help in accessing vital equipment and meeting physical healthcare needs; physiotherapists may provide care and support, and advice on mobility and falls prevention, and chest care in cases of pneumonia. Many health and social care professionals are keen to provide better quality end of life care to people with dementia. A recent study, using a rapid participatory appraisal methodology, found that all professionals involved in palliative and end of life care in dementia were acutely aware of the limitations both in their own knowledge and skills and in the health and social care system within which they were working. Many of the barriers to good quality end of life care in dementia highlighted in the studies were associated with lack of interagency communication, not having a clear dementia care pathway, and a sense of helplessness (Harrison Dening et al., 2012; Sampson et al., 2012).
There are two very clear elements to good quality dementia care: the medical model/approach and the social model/approach. Both are inextricably linked and both of distinct value to the care delivered to people with dementia and their families. Early on in the illness it will be necessary to discuss the purpose of diagnostic investigations, what they entail, and how results will be given. This is an important time to establish a relationship with people with dementia and their family, understanding the main problems from their perspective, and liaising with other health and social care providers.
There is a growing interest in a ‘care management’ approach for families affected by dementia; this would entail detailed assessment of need and a coordination of care and support from health, social, and voluntary care professionals. Such an approach is considered essential in meeting the palliative and end of life care needs of people with dementia and their family carers (Judd et al., 2011). A care management approach is identified as a positive determinant of how well a carer is supported in his or her caring role (Hibberd, 2011), and is an approach that is best applied throughout the illness, from the diagnosis of dementia, living with dementia, to death and beyond in supporting families in their loss (Harrison Dening, 2010).
Admiral Nursing is one approach in providing care management throughout the course of the illness (Harrison Dening, 2010). Following diagnosis, appropriate follow-up is essential to discuss the prognosis and issues of legal and financial planning, give advice on the next steps, commence the discussion of ACP, and continue liaison with local services. Later in the illness, nursing and allied healthcare input will depend largely on symptoms and their management. Information and guidance provided within the context of continuing professional support, as in the case of Admiral Nursing (specialist dementia care nurses), is more successful in supporting family carers and reducing anxiety levels (Wills and Woods, 1998). A distinct advantage of the Admiral Nurse service is the long-term nature of the work with families of people with dementia and the support offered throughout the trajectory of the illness; this support is of particular value during transitions from community to care home (Harrison Dening, 2010).
Inappropriate interventions and treatment at the end of life
Despite the high mortality in advanced dementia, particularly for those who are admitted to the acute hospital, people with dementia receive as many painful investigations and procedures (e.g. arterial blood gas sampling) and are more likely to be physically restrained compared with patients who are cognitively intact (Morrison and Siu, 2000a). This suggests that clinicians fail to adopt a palliative or supportive approach to patient care, possibly because people with advanced dementia are not perceived to be suffering from a ‘terminal illness’. This may be due to poor understanding of the pathophysiology of dementia amongst healthcare professionals (Thuné-Boyle et al., 2010). Other vital components of good end of life and person-centred care are also neglected with little acknowledgement of spiritual needs, failure to withdraw inappropriate medications, and nonreferral to hospital palliative care teams (Sampson et al., 2006). Patients dying with dementia in nursing homes often receive burdensome interventions. In the American study of Mitchell et al., (2009), 29% received enteral tube nutrition and 12.4% were hospitalized.
The evidence base on palliative care in dementia is somewhat limited, particularly when compared to research on palliative care for people dying from cancer. Systematic reviews have identified how care mainly focuses on specific interventions such as fever management policies, pain control, or the withdrawal of care, i.e. not prescribing antibiotics, rather than a more active palliative model (Sampson et al., 2005; Goodman et al., 2009). Good person-centred care requires a more rounded approach, and a number of multicomponent complex interventions and pathways have been developed that may improve the quality and outcomes of care for older people with dementia in the acute hospital and in the community.
Care pathways and policies
The English National Dementia Strategy (Department of Health, 2009) contained little regarding end of life care, and the English End of Life Care Strategy (Department of Health, 2008) made little specific reference to dementia. Perhaps this illustrates how patients with dementia fall through gaps in the health and social care system? The National Institute for Health and Clinical Excellence (NICE) guidelines for dementia (National Collaborating Centre for Mental Health, 2007) do include some recommendations, in particular the use of the Gold Standards Framework and the Liverpool Care Pathway for the care of the dying.
The Gold Standards Framework
The UK Gold Standards Framework (GSF) (〈http://www.goldstandardsframework.org.uk/〉) is a multidimensional programme that supports and trains staff to identify patients requiring palliative or supportive care towards the end of life. It uses a structured approach to recognize when the last year of life may have begun, to assess patients’ needs, symptoms, and preferences, and to plan care around these, in particular supporting people to live and die where they choose. Although not developed specifically for patients with dementia, the GSF developed for care homes attempts to enhance communication between GPs and other specialists, particularly out of hours care. Introduction of the GSF has been shown to increase the proportion of residents with ACP and to reduce the numbers admitted to acute hospitals (Badger et al., 2009).
The Liverpool Care Pathway
The Liverpool Care Pathway (LCP) was originally developed to improve care in hospital for cancer patients during the last 48 h of life (Ellershaw, 2007). It has been modified for use in people dying with other diagnoses and different settings including hospices and nursing homes. The pathway has three phases: initial assessment of the patient, ongoing assessment, and care after death. As well as attending to medical needs, such as the discontinuation of inappropriate interventions and medications and the provision of comfort measures (e.g. mouth care), the pathway enhances person-centred care by assessing patients’ insight into their situation and their psychological and spiritual needs and those of their family. There are, however, a number of issues pertinent to people with dementia that may challenge implementation for these patients. The pathway is only of use if it is recognized that a patient is moving into the ‘dying phase’, and this can be difficult to identify in people with advanced dementia. Concerns have been raised that in dementia, ‘dying’ can take many years and that food and fluids may be withdrawn too early (Treloar, 2008). However, the pathway is flexible and it is entirely appropriate that patients are sometimes moved from the pathway back to more active management should their clinical condition improve. Future adaptation and evaluation of the pathway for use in people with dementia could significantly enhance quality of care.
Complex interventions and care programmes
Interventions in hospital settings
Ahronheim et al. (2000) conducted a randomized controlled trial of an intervention in which people with dementia received assessment and care plan recommendations from a palliative care team with the goal of enhancing patient comfort in an acute hospital. The intervention did not decrease rates of readmission to hospital, average length of stay, or mortality, but there was a significant increase in written palliative care plans and patients received fewer intravenous drugs. The authors highlighted the ‘unique barriers’ to providing good end of life care, including prognostic uncertainty, and suggest that care planning may be more effective when done outside the busy acute hospital environment.
Lloyd-Williams and colleagues used multidisciplinary prescribing guidelines on wards for older people with dementia. There was a significant decrease in the prescribing of antibiotics in the last 2 weeks of life and patients were much more likely to be prescribed analgesia, including opiates (Lloyd-Williams and Payne, 2002).
Interventions in nursing homes and specialist care units
A specific approach in the US has been that of the Dementia Special Care Unit (DSCU). Volicer et al. (1994) compared this approach to nursing home settings and found that the DSCU, which provided a palliative care approach focusing on ‘maintenance of patient’s comfort rather than maximal survival’, led to less discomfort, fewer antibiotic prescriptions, less use of intravenous drugs, and decreased transfers to the acute hospital. Mortality in the DSCU was higher but costs were significantly lower.
Training and educational programmes on end of life care for nursing home staff also appear to be effective in improving knowledge and increasing satisfaction with end of life care in bereaved family members (Arcand et al., 2009).
Interventions in the community
The Palliative Excellence in Alzheimer Care Effort (PEACE) Programme is an American programme set up to improve end of life care for people with dementia. It takes a long-term disease management model, integrating ‘palliative care into ongoing comprehensive primary care of persons with dementia over the disease course, from initial diagnosis to death’ (Shega, 2003). The patient-centred principles of the programme include ACP, education on the disease process, improved care coordination, and family support. This is implemented by clinical nurse specialists who coordinate care between families, physicians, and other health and social care professionals. Those involved in the programme were more likely to die in hospice or a place of their choosing, less likely to die in the acute hospital, and their carers were more satisfied with the quality of care received.
In the UK, the ‘Hope for Home’ service has supported patients with severe dementia and their families, providing a multidisciplinary and holistic model coordinated by a specialist in old age psychiatry. Preliminary results have shown that total cost savings of home care compared to nursing home care for 14 patients was £696,930 and that 57% of participants died in their own home (Treloar et al., 2009)—a significantly higher proportion than would be expected in the UK general population (22%) (Gomes and Higginson, 2008).
Carers’ and Relatives’ Burden, Grief, Bereavement, and Support
As the number of people with dementia increases, so also will the number of family carers, with current estimations in the UK of 670,000 (Lakey et al., 2012). Given that the period during which people with dementia require ongoing care is generally longer compared to other illnesses, this means that carers of people with dementia have a journey ahead of them, one that may be long and tortuous. Many carers are spouses and therefore likely to be old and to have physical or mental health needs of their own, to the extent that these may hamper their ability to provide care to the person with dementia (Harrison Dening, 2011).
However, the relationship that the carer had with the individual prior to his or her illness still remains and ‘carer’ is an additional but not a replacement identity for previous relationships and roles, e.g. husband or son. The changing nature of the relationship often requires physical and emotional adjustments throughout its course and it can bring a number of predeath losses that cause caregivers to grieve (Liken and Collins, 1993). Liken and Collins state that even when family carers are able to work through their predeath grief, they cannot fully re-establish their lives until after the death of their relative.
It is often assumed that when a person with dementia is admitted into a long-term care environment this largely resolves the carer burden and stress. This is often not the case and may leave the carer with feelings of guilt at ‘giving up’. They may feel they have gone against the expressed wishes of their loved one and this may leave them with a sense of failure in that they were unable to continue (Givens et al., 2011a, 2011b). This can manifest itself in the carer at times being overly critical of the care provided, so it is important to consider that the previous levels of burden and separation stress (Kiely et al., 2008) may not be resolved and are in danger of going undetected and unsupported. Providing support to carers, recognizing the circumstances in which they find themselves, and allowing them the opportunity to talk about their situation can enable some to provide at-home care for longer periods prior to institutionalization (Etters et al., 2008).
Loss, grief, and bereavement
Caring for a person with dementia is considered more burdensome and ‘unrelenting’ when compared with other long-term conditions (Sachs et al., 2004), with increased vulnerability to complex or abnormal grief reactions (Schulz et al., 1997). Some carers find that they have grieved so much during the course of the illness that they have no strong feelings left when the person dies, yet others feel a further acute sense of loss when the person dies.
A sense of loss is one of the most powerful feelings that carers of people with dementia experience. This sense of loss and associated anticipatory grief can be felt whilst the person with dementia is still alive, and depending on the relationship with the person with dementia, the carer may experience grief for many forms of loss (see Box 28.2). The manner in which family carers experience and manage their grief reactions to the predeath losses can influence not only caregiving outcomes but also subsequent adjustment once those with dementia have died. It is therefore crucial that their grief is addressed (Collins et al., 1993; Almberg et al., 2000).
In a systematic review, Chan et al. (2013) described grief in dementia carers as a complex reaction to losses occurring before and after death. Chan et al. argue that anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalized. Evidence about the prevalence of grief is less robust, with studies reporting anticipatory grief between 47% and 71% and complicated grief after death in around 20% of dementia carers. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated grief after death (Chan et al., 2013).
It is important that bereaved carers of people with dementia receive follow-up care in recognition of their loss and bereavement. Many carers feel a second, and huge, sense of loss and they may also feel that their life no longer has the meaning that it has had for many years. Often the care services that were present in meeting the person with dementia’s needs instantly withdraw, leaving a void in the carer’s life. Carers are often discharged from services that were related to the person with dementia so their expressions of grief are often not observed or addressed adequately. Care, such as Admiral Nursing, that is delivered with a focus on the whole family affected by dementia will take into account carer issues and provide much needed support after the death of the person with dementia (Harrison Dening, 2010).
Older people dying with dementia often have complex physical and mental health needs. These require a multidisciplinary approach that pays attention not just to physical symptoms but also to their spiritual and social needs, supporting their family carers and the staff that work with them, in a range of settings from community to the acute hospital. A number of promising care initiatives and pathways have been set up, most of which take such a holistic approach, in keeping with the core values of palliative care and the philosophy of those working in mental healthcare of older people. The recent research and policy interest in this field underlines its importance and provides hope that the care of many frail older people dying with dementia can be improved.
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