Art & science dementia series: 19
Palliative and end of life care for people with dementia Harrison Dening KH (2016) Palliative and end of life care for people with dementia. Nursing Standard. 30, 23, 42-49. Date of submission: September 13 2014; date of acceptance: January 30 2015.
Abstract Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.
Author Karen Harrison Dening Head of research and evaluation, Dementia UK, London. Correspondence to: [email protected] @ KDening
Keywords
diseases such as dementia. Multiple morbidities have a cumulative effect on the individual’s function, quality of life and care needs, and added to these is the risk of acute physical illness. In the UK and other developed countries, the number of deaths will increase steadily over the coming years. The majority of deaths occur in those over 65 years, but the proportion of deaths in people over 85 years is set to increase (Gomes and Higginson 2008). Evidence suggests that older people have inequitable access to effective end of life care and there are further barriers preventing the needs of those with diseases such as dementia from being met adequately (Davies and Higginson 2004, Sampson et al 2006). This article considers some of the main issues in providing palliative and end of life care for people with dementia.
Dying and dementia
dementia, end of life care, older people, palliative care, quality of life, symptom burden
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THE POPULATION OF Europe and other developed nations is ageing. By 2040, nearly one in four of the UK population will be over 65 years (Office for National Statistics 2015). Primary prevention of pathologies such as cardiovascular disease is increasingly successful, and the treatment and survival rates of some cancers are improving. Thus, a higher proportion of the world’s population is living to old age. This has led to an increase in the number of people who live long enough to develop multiple morbidities associated with old age, particularly
Approximately 820,000 people in the UK have dementia, and it is estimated that this number will rise to one million by 2025 and two million by 2051 (Prince et al 2014). The prevalence of dementia increases with age, affecting 6% of people aged 75-79 years and one third of those over 95 years (Knapp and Privette 2007). Thus, an increasing number of people will die with dementia. According to results from the UK Medical Research Council Cognitive Function and Ageing Study, a large multicentre study of the health and cognitive function of 13,000 older people, those who died between 65 years and 69 years had a 6% risk of dying with dementia, while people over 95 years had a 58% risk. This means that one in three people over 65 years in the UK will die with dementia (Brayne et al 2006).
Multimorbidity and dementia Many people have illnesses and disabilities in addition to dementia. Multimorbidity can be defined as the co-existence of two or more chronic conditions in which one is not necessarily more central than the others (Boyd and Fortin 2010). It is characterised by complex interactions
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of co-existing diseases for which a medical approach focused on a single disease does not suffice. Multimorbidity correlates with age and represents the most common disease pattern found among older people. Those with dementia and cognitive impairment show increased levels of multimorbidity (Doraiswamy et al 2002, Cigolle et al 2007). Common multimorbid conditions include cancer, cardiovascular disease, diabetes and musculoskeletal disorders, such as fractures. Tschanz et al (2004) found that multimorbid medical conditions are positive predictors of mortality in people with dementia, although dementia itself was the strongest predictor of mortality, with the risk being two to three times greater than in those with other life-limiting illnesses. Multiple conditions not only have a cumulative effect, but also interact to increase this effect, especially in people with dementia. In comparing the illness trajectories of people with and without dementia, Melis et al (2013) found that multimorbidity was related to accelerated decline in people with dementia but not in those without dementia. Moreover, people with dementia are more likely to experience inadequate assessment and treatment of any multimorbid condition than people with other long-term conditions (Davies and Higginson 2004). These illnesses and conditions, in addition to dementia, can present clinicians and family carers with practical problems in managing treatment regimens and understanding prognoses. Carers may find decision making especially difficult when multimorbid conditions threaten the life of a person with dementia, and may feel that they do not fully understand the life-limiting nature of dementia.
Frailty and dementia Frailty and dementia are multifactorial in origin and share some common aetiological pathways. For example, smoking, obesity, lack of physical activity and depression have been linked to the development of frailty and dementia (Hamer and Chida 2009). Thus, frailty and dementia have been conceptualised as final common pathways resulting from an accumulation of exposures over several years (Neale et al 2001). Frailty and dementia have adverse effects on a range of outcomes at the end of life, with people with frailty and dementia at increased risk of acute hospital admission, falls and being placed in a care home (Strawbridge et al 1998, Fried et al 2001, Mukadam and Sampson 2011). Despite the effects of frailty and dementia on older people and their families, they have not traditionally been conceptualised as ‘terminal’
or ‘life-limiting’ conditions. Mitchell et al (2004) asked nursing home staff to estimate the prognoses and life expectancies of people with advanced dementia on admission to the nursing home. Only 1.1% of staff perceived newly admitted residents to have life expectancies of less than six months, although 71% of residents were to die within this time. There is also a perception that people with dementia live for many years into the advanced stages of the disease. One UK population study gave a median survival time from diagnosis of dementia to death of 4.1 years (Xie et al 2008). There is a strong correlation between these survival times and age at diagnosis, with people aged between 65 and 69 years surviving for a median of 10.7 years, and those aged 90 years and above surviving for 3.8 years (Xie et al 2008).
Recognition of the end of life Identifying when a frail older person with dementia is nearing the end of life is not always easy. Numerous studies have attempted to identify prognostic indicators or indices that may guide when to adopt a palliative approach to care. However, these tools have been found to be more reliable for identifying people with dementia at low risk of dying than for identifying those at high risk of death (van der Steen et al 2005). A more practical and reliable approach may involve clinical judgement, discussion with families and carers, and reassessing or shifting the goals of care towards palliation, especially at times of acute, inter-current illness or care transition (van der Steen 2010). An awareness of the effects of acute illnesses as well as dementia should alert clinicians to the possibility that a person with dementia may be nearing the end of life. For example, acute physical illnesses requiring emergency hospital admission, such as pneumonia or urinary tract infection, may be indicators of imminent death in people with advanced dementia (Morrison and Siu 2000a, Mitchell et al 2009, Sampson et al 2009a). People with dementia also have a markedly increased mortality rate up to six months after hip fracture (55%) or pneumonia (53%), compared with 12% and 13% respectively in cognitively intact patients (Morrison and Siu 2000a). Shorter term mortality is also poor, with 24% of people with moderate or severe dementia dying after acute unplanned medical admissions, compared with 7.5% of those without dementia (Sampson et al 2009b). The median length of stay in UK nursing homes, where most 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 (FAST) score
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Art & science dementia series: 19 of 7c and above (Table 1), is associated with a life expectancy similar to that of well-recognised terminal diseases such as metastatic breast cancer (Mitchell et al 2009). There is little evidence to suggest that active 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). However, there is a growing interest in how a palliative approach may be beneficial for frail older people with advanced dementia.
Palliative and end of life care Historically, many older people and their carers have reported that palliative care services were unavailable to them (Cleary and Carbonne 1997). This was probably because such services focused on people with cancer and specialist needs. 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’
(Gómez-Batiste et al 2007). End of life care is defined as care that helps those with advanced, progressive, incurable illness to live as well as possible until they die. It is also important to note that end of life care ‘seeks neither to hasten death, nor to postpone it’ (Radbruch and Payne 2009). After many years of policy and guidance indicating the need for improved access to palliative and end of life care services for older people, changes have been made. The call for equal access to palliative and end of life care has been extended to include people with dementia, for example (Department of Health 2001, Davies and Higginson 2004, National Collaborating Centre for Mental Health 2006). The inclusion of dementia in palliative and end of life care policy and guidance has resulted from several contributory factors, including the increasing numbers of people with dementia, concerns about inappropriate interventions and treatments at the end of life, and discrimination that limits equal access to palliative and end of life care services (Lloyd-Williams and Payne 2002). The European Association of Palliative Care published a white paper defining the principles of palliative care for people with dementia (van der Steen et al 2014). All definitions of palliative care draw on a common approach that involves
TABLE 1 Functional assessment staging Stage
Characteristic
1
Normal ageing
No deficits whatsoever.
2
Possible mild cognitive impairment
Subjective functional deficit.
3
Mild cognitive impairment
Objective functional deficit interferes with a person’s most complex tasks.
4
Mild dementia
Instrumental activities of daily living become affected, such as bill paying, cooking, cleaning and travelling.
5
Moderate dementia
Needs help selecting proper attire.
6a
Moderately severe dementia
Needs help putting on clothes.
6b
Needs help bathing.
6c
Needs help toileting.
6d
Experiences urinary incontinence.
6e 7a
Experiences faecal incontinence. Severe dementia
Speaks five or six words during the day.
7b
Speaks only one word clearly.
7c
Can no longer walk.
7d
Can no longer sit up.
7e
Can no longer smile.
7f
Can no longer hold up head.
(Reisberg 1988)
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valuing the autonomy and dignity of patients and their families, a collaborative relationship between healthcare professionals and patients and their families, good communication, and a central goal to maintain quality of life. Such characteristics are similar to those of person-centred care (Kitwood 1997), the philosophical underpinning of most dementia care practices. However, given the similarity in the palliative and person-centred care approaches, nurses need to understand the evidence base for various end of life interventions for people with dementia.
Symptom burden in advanced dementia at the end of life In contrast to the early and middle stages of dementia, the clinical features of the advanced stages of dementia have been less researched. People with advanced dementia have a range of symptoms similar to those found in the terminal stages of cancer, including pain and dyspnoea. Pressure ulcers, agitation, difficulty in swallowing and loss of appetite are also common in people with advanced dementia as the end of life approaches.
Pain
Pain is common in people with advanced dementia, and is often under-diagnosed and under-treated (Scherder et al 2009). In retrospective interviews with relatives and carers, McCarthy et al (1997)
found that significantly more patients with dementia had reportedly experienced pain in the last six months of life compared with those with cancer (75% versus 60% respectively), and that pain control was often inadequate. Similarly, among patients with a fractured neck of femur, those with cognitive impairment received one third of the amount of analgesic as those who were cognitively intact (Morrison and Siu 2000b). No consistent evidence suggests that people with advanced dementia experience pain less intensely than others, but they have difficulties in communicating that they are in pain and staff have difficulties in interpreting their pain signals. Pain often manifests as behavioural changes, such as agitation, distress, social withdrawal, depression or resistive behaviour (Scherder et al 2009), but such changes in behaviour may be interpreted as psychological or psychiatric problems associated with dementia. The ‘gold standard’ for pain assessment is self-reporting. Contrary to popular belief, many people with moderate to severe dementia can report pain reliably (Zwakhalen et al 2006). In those with advanced dementia, use of a validated observational pain scale such as the Pain Assessment in Advanced Dementia scale may be necessary (Warden et al 2003) (Table 2). The assessment of pain in patients with advanced dementia can be complex, and it has been suggested that there is no evidence that pain produces any particular signs
TABLE 2 Pain Assessment in Advanced Dementia scale Items to be scored
0
1
2
Breathing independent of vocalisation
Normal
Occasional laboured breathing, short periods of hyperventilation.
Noisy, laboured breathing, long periods of hyperventilation, Cheyne-Stokes respiration.
Negative vocalisation
None
Occasional moan or groan, low-level speech with a negative or disapproving quality.
Repeated troubled calling out, loud moaning or groaning, crying.
Facial expression
Smiling or inexpressive
Sad, frightened, frowning.
Facial grimacing.
Body language
Relaxed
Tense, distressed, pacing, fidgeting.
Rigid, fists clenched, knees pulled up, pulling or pushing away, striking out.
Consolability
No need to console
Distracted or reassured by voice or touch.
Unable to console, distract or reassure.
Score
Total (Warden et al 2003)
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Art & science dementia series: 19 or behaviours that are unique to pain (Regnard et al 2003); these may be the result of other forms of distress, so tools such as the Disability Distress Assessment Tool may be more appropriate (Regnard et al 2007). Managing pain in people with advanced dementia requires careful assessment for possible underlying causes. This should include clinical examination, observation of behaviours at rest and during movement, and discussion with family members or staff who know the person well. The aetiology of pain may be acute, for example urine retention or fracture, or the result of a chronic cause, for example pressure ulcers, awkward positioning in a chair or bed, or arthritis (Davis and Srivastava 2003). Treating pain in people with advanced dementia requires a stepped approach (American Geriatric Society 1998). Depending on the cause, non-pharmacological interventions may be helpful, particularly if arthritis is present. This approach may include repositioning, provision of optimal seating or specialist beds, physiotherapy, massage, and heat or cold therapy. Simple analgesics, such as paracetamol or non-steroidal anti-inflammatory drugs, can be effective. Central to achieving an effective result is regular prescribing, and ‘as required medication’ is not advocated because people with advanced dementia may not request it or report that they are in pain. Analgesic prescribing and management is often not complex in this group of people (Pace and Scott 2013). A study by Husebo et al (2011) showed that regular paracetamol was effective in 63% of participants with dementia; of the 25% of participants who received opioids, only 2% had them discontinued because of side effects.
Behavioural and psychological symptoms
Behavioural and psychological symptoms of dementia are common, affecting 90% of people at some time during the course of the disease. The symptoms are distressing for the people concerned, and their families and carers, and a strong predictor of institutionalisation to nursing or residential homes (Dening and Milne 2011). Different symptoms tend to emerge at different stages of the condition, with mood disorders and depression being noted earlier in the disease course and psychotic symptoms, such as hallucinations and delusions, being more common in the moderate stages. In the advanced stages of dementia, more than half of patients can remain agitated and distressed (Mitchell et al 2009). The management of these symptoms is complex and requires a range of therapeutic approaches. Difficult behaviours such as aggression and
resistance to care may be indicators of unmet needs such as under-diagnosed or under-treated pain, delirium or infection. Patients therefore require a comprehensive assessment, which can be challenging in people with advanced dementia and limited verbal communication ability.
Eating and swallowing
People with advanced dementia often develop swallowing difficulties and historically would have received tube feeding. However, in a Cochrane review, Sampson et al (2009b) found inconclusive evidence that tube feeding improves survival time, mortality risk, nutritional parameters and incidence of pressure ulcers in people with advanced dementia, and that it may increase pulmonary secretions, incontinence, mortality and morbidity. The decision to use tube feeding is emotive and influenced by complex ethical issues, clinical need, local practice, clinician and carer preferences, and whether there are advance directives or advance care plans in place. Ethical considerations include whether the lives of people with advanced dementia should be prolonged artificially and what constitutes ‘euthanasia’ (that is, the hastening of death by withholding food and fluids). It has been argued that the absence of evidence for the benefit of tube feeding does not mean that it is inappropriate in all patients with advanced dementia and that each individual should receive holistic assessment by a specialist in swallowing (Sampson et al 2009b). A decision to forgo artificial hydration and nutrition may be misinterpreted by family carers, resulting in concern that the patient is being starved. Palecek et al (2010) argued that this might be overcome through the use of the term ‘comfort feeding’, which stresses the shift in a patient’s goals of care. Such comfort feeding is achieved through careful hand feeding.
Infections and pneumonia
Pneumonia and other infections, especially of the urinary tract, are common in patients with advanced dementia. Mitchell et al (2009) found that over an 18-month period, 53% of nursing home residents with advanced dementia had febrile episodes and 41% of residents had pneumonia at some point. Furthermore, Burns et al (1990) identified that these conditions are the immediate cause of death in up to 71% of cases. People with advanced dementia are often immobile, bed bound and at increased risk of aspiration, and they 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) found no difference
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in mortality rates between people receiving antibiotics and those receiving only palliative care. van der Steen et al (2009) found that, with or without the use of antibiotics, pneumonia can cause discomfort in people with dementia, and that antibiotics can delay death but leave patients exposed to the risk of further pain while prolonging the dying phase. In such situations, adequate symptom control through the use of analgesia may be appropriate.
Supporting families affected by dementia Dementia affects whole families, and people close to those with dementia often find themselves providing increasing amounts of care and support as the disease progresses. Therefore, those delivering care must be mindful of the whole family unit and the relationships between family members. According to one study using a rapid participatory appraisal method (Harrison Dening et al 2012, Sampson et al 2012), health and social care professionals, such as district nurses, care managers, palliative care team and GPs, were keen to provide better quality end of life care to people with dementia. All were acutely aware of the limitations in their knowledge and skills, and in the health and social care system in which they worked. Many of the barriers preventing delivery of high quality end of life care for people with dementia highlighted in the studies were associated with lack of inter-agency communication, not having a clear dementia care pathway and a sense of helplessness.
Care management
Interest in adopting a ‘care management’ approach for families affected by dementia is growing, and the approach is being increasingly considered essential to meet the palliative and end of life care needs of people with dementia and their family carers (Judd et al 2011). Such an approach would entail detailed assessment of the needs of each person with dementia and their carers, and co-ordination of care and support from health, social and voluntary care services. As such, the approach can be a significant determinant of how well carers adapt to their caring roles (Hibberd 2011). However, while care management in dementia works best if it is available throughout the progression of the disease and involves support for families to deal with their sense of loss, equitable access to this approach is patchy across the UK (Harrison Dening 2010). Admiral Nursing provides care management throughout the progression of the illness (Box 1) (Harrison Dening 2010). Following diagnosis, appropriate follow up is essential to
support prognosis, discuss issues of legal and financial planning, advise on the next steps, start discussions about advance care planning, and continue liaison with local services. As the disease progresses, nursing and allied healthcare input depends largely on symptoms and their management. By providing information and guidance in the context of continuing professional support, Admiral nurses can support family carers more successfully and reduce their anxiety (Wills and Woods 1998). A distinct advantage of the Admiral Nursing service is the long-term nature of their work with families of people with dementia, which is of particular value during transitions from the community to the care home (Harrison Dening 2010).
Interventions and treatment at the end of life
Despite the high mortality rate associated with advanced dementia, particularly for those who are admitted to acute hospitals, people with dementia receive as many painful investigations and procedures, and are more likely to be physically restrained, than patients who are cognitively intact (Morrison and Sui 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 prognostically to have a terminal illness or to be near to death. This perception may be a result of poor understanding of the pathophysiology of dementia among healthcare professionals (Thuné-Boyle et al 2010). Other vital components of effective end of life and
BOX 1 Admiral Nursing approach Admiral nurses are registered nurses specialising in dementia care. With help from other healthcare professionals, they work with people with dementia and their family carers in a variety of settings to improve their quality of life throughout the dementia journey. Admiral nurses: Provide psychological support to help people with dementia and their family carers to understand and deal with their feelings. Help families to understand dementia and undertake a range of interventions that help people to live well with the disease, and develop skills to improve communication and maintain relationships. Are an invaluable source of contact and support for families at specific points of difficulty, such as when the disease is diagnosed, when it advances, and when difficult decisions about, for example, transitions into care establishments must be made. Advise on referrals to other appropriate services and liaise with other healthcare professionals on behalf of families. Provide care co-ordination to family carers, especially palliative and end of life care, and bereavement support after the death of people with dementia. (Harrison Dening 2010)
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Art & science dementia series: 19 person-centred care are also often neglected, with little acknowledgement of spiritual needs, withdrawal of inappropriate medications or referral to hospital palliative care teams (Sampson et al 2006). Similarly, people dying with dementia in nursing homes often receive burdensome interventions. Mitchell et al (2009) found, for example, that 29% of people with dementia had received enteral tube nutrition and 12.4% of individuals had been admitted to hospital. The evidence base for palliative care for people with dementia is somewhat limited when compared with that for palliative care for those with other conditions, such as cancer. Systematic reviews show how care mainly focuses on specific interventions, such as fever management or pain control, or on the withdrawal of care, such as the prescribing of antibiotics, rather than on a more active palliative model (Sampson et al 2005, Goodman et al 2010). However, there is sufficient evidence to justify making significant changes to support for
people as they stop living with dementia and start dying with dementia.
Conclusion Person-centred care and effective palliative care for people with dementia require a more rounded approach. People with dementia and multiple morbidities require multi-component or complex interventions that in turn necessitate the engagement of a range of specialties. This engagement can be co-ordinated to ensure the delivery of high quality palliative and end of life care, but all clinicians must understand that dementia is a life-limiting disease and when the goals of treatment should become the goals of palliation NS Acknowledgement Nursing Standard wishes to thank Karen Harrison Dening, Head of Research and Evaluation, Dementia UK, for co-ordinating and developing the Dementia series.
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Sampson EL , Gould V, Lee D, Blanchard MR (2006) Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age and Ageing. 35, 2, 187-189. Sampson EL, Blanchard MR, Jones L, Tookman A, King M (2009a) Dementia in the acute hospital: prospective cohort study of prevalence and mortality. British Journal of Psychiatry. 195, 1, 61- 66. Sampson EL , Candy B, Jones L (2009b) Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews. 2. CD007209. Sampson E, Mandal U, Holman A et al (2012) Improving end of life care for people with dementia: a rapid participatory appraisal. BMJ Supportive and Palliative Care. 2, 2, 108-114. Scherder E , Herr K , Pickering G , Gibson S, Benedetti F, Lautenbacher S (2009) Pain in dementia. Pain. 145, 3, 276 -278. Strawbridge WJ, Shema SJ, Balfour JL , Higby HR, Kaplan GA (1998) Antecedents of frailty over three decades in an older cohort. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences. 53, 1 , S9-S16. Thuné-Boyle ICV, Sampson EL, Jones L, King M, Lee DR, Blanchard MR (2010) Challenges to improving end of life care of people with advanced dementia in the UK . Dementia. 9, 2, 259-284. Tschanz JT, Corcoran C, Skooq I et al (2004) Dementia: the leading predictor of death in a defined elderly population: the Cache County Study. Neurology. 62, 7, 1156-1162. van der Steen JT (2010) Dying with dementia: what we know after more than a decade of research . Journal of Alzheimer’s Disease. 22, 1, 37-55.
van der Steen JT, Ooms ME , van der Wal G , Ribbe MW (2005) Withholding or starting antibiotic treatment in patients with dementia and pneumonia: prediction of mortality with physicians’ judgment of illness severity and with specific prognostic models . Medical Decision Making. 25, 2 , 210 -221 . van der Steen JT, Pasman HR , Ribbe MW, van der Wal G , Onwuteaka-Philipsen BD (2009) Discomfort in dementia patients dying from pneumonia and its relief by antibiotics . Scandinavian Journal of Infectious Diseases. 41 , 2 , 143 -151 . van der Steen JT, Radbruch L , Hertogh CM et al (2014) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care . Palliative Medicine. 28, 3, 197-209. Warden V, Hurley AC, Volicer L (2003) Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale . Journal of the American Medical Directors Association. 4, 1 , 9 -15. Wills W, Woods B ( 1998) Report for the NHS Executive North Thames R&D Directorate. An Evaluation of the Admiral Nursing Service: An Innovative Service for the Carers of People with Dementia. The Stationery Office, London . Xie J, Brayne C, Matthews FE (2008) Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ. 336, 7638, 258-262. Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP (2006) Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatrics. 6, 3.
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Palliative and end of life care for people with dementia Harrison Dening KH (2016) Palliative and end of life care for people with dementia. Nursing Standard. 30, 23, 42-49. Date of submission: September 13 2014; date of acceptance: January 30 2015.
Abstract Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.
Author Karen Harrison Dening Head of research and evaluation, Dementia UK, London. Correspondence to: [email protected] @ KDening
Keywords
diseases such as dementia. Multiple morbidities have a cumulative effect on the individual’s function, quality of life and care needs, and added to these is the risk of acute physical illness. In the UK and other developed countries, the number of deaths will increase steadily over the coming years. The majority of deaths occur in those over 65 years, but the proportion of deaths in people over 85 years is set to increase (Gomes and Higginson 2008). Evidence suggests that older people have inequitable access to effective end of life care and there are further barriers preventing the needs of those with diseases such as dementia from being met adequately (Davies and Higginson 2004, Sampson et al 2006). This article considers some of the main issues in providing palliative and end of life care for people with dementia.
Dying and dementia
dementia, end of life care, older people, palliative care, quality of life, symptom burden
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: journals.rcni.com/r/author-guidelines.
THE POPULATION OF Europe and other developed nations is ageing. By 2040, nearly one in four of the UK population will be over 65 years (Office for National Statistics 2015). Primary prevention of pathologies such as cardiovascular disease is increasingly successful, and the treatment and survival rates of some cancers are improving. Thus, a higher proportion of the world’s population is living to old age. This has led to an increase in the number of people who live long enough to develop multiple morbidities associated with old age, particularly
Approximately 820,000 people in the UK have dementia, and it is estimated that this number will rise to one million by 2025 and two million by 2051 (Prince et al 2014). The prevalence of dementia increases with age, affecting 6% of people aged 75-79 years and one third of those over 95 years (Knapp and Privette 2007). Thus, an increasing number of people will die with dementia. According to results from the UK Medical Research Council Cognitive Function and Ageing Study, a large multicentre study of the health and cognitive function of 13,000 older people, those who died between 65 years and 69 years had a 6% risk of dying with dementia, while people over 95 years had a 58% risk. This means that one in three people over 65 years in the UK will die with dementia (Brayne et al 2006).
Multimorbidity and dementia Many people have illnesses and disabilities in addition to dementia. Multimorbidity can be defined as the co-existence of two or more chronic conditions in which one is not necessarily more central than the others (Boyd and Fortin 2010). It is characterised by complex interactions
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of co-existing diseases for which a medical approach focused on a single disease does not suffice. Multimorbidity correlates with age and represents the most common disease pattern found among older people. Those with dementia and cognitive impairment show increased levels of multimorbidity (Doraiswamy et al 2002, Cigolle et al 2007). Common multimorbid conditions include cancer, cardiovascular disease, diabetes and musculoskeletal disorders, such as fractures. Tschanz et al (2004) found that multimorbid medical conditions are positive predictors of mortality in people with dementia, although dementia itself was the strongest predictor of mortality, with the risk being two to three times greater than in those with other life-limiting illnesses. Multiple conditions not only have a cumulative effect, but also interact to increase this effect, especially in people with dementia. In comparing the illness trajectories of people with and without dementia, Melis et al (2013) found that multimorbidity was related to accelerated decline in people with dementia but not in those without dementia. Moreover, people with dementia are more likely to experience inadequate assessment and treatment of any multimorbid condition than people with other long-term conditions (Davies and Higginson 2004). These illnesses and conditions, in addition to dementia, can present clinicians and family carers with practical problems in managing treatment regimens and understanding prognoses. Carers may find decision making especially difficult when multimorbid conditions threaten the life of a person with dementia, and may feel that they do not fully understand the life-limiting nature of dementia.
Frailty and dementia Frailty and dementia are multifactorial in origin and share some common aetiological pathways. For example, smoking, obesity, lack of physical activity and depression have been linked to the development of frailty and dementia (Hamer and Chida 2009). Thus, frailty and dementia have been conceptualised as final common pathways resulting from an accumulation of exposures over several years (Neale et al 2001). Frailty and dementia have adverse effects on a range of outcomes at the end of life, with people with frailty and dementia at increased risk of acute hospital admission, falls and being placed in a care home (Strawbridge et al 1998, Fried et al 2001, Mukadam and Sampson 2011). Despite the effects of frailty and dementia on older people and their families, they have not traditionally been conceptualised as ‘terminal’
or ‘life-limiting’ conditions. Mitchell et al (2004) asked nursing home staff to estimate the prognoses and life expectancies of people with advanced dementia on admission to the nursing home. Only 1.1% of staff perceived newly admitted residents to have life expectancies of less than six months, although 71% of residents were to die within this time. There is also a perception that people with dementia live for many years into the advanced stages of the disease. One UK population study gave a median survival time from diagnosis of dementia to death of 4.1 years (Xie et al 2008). There is a strong correlation between these survival times and age at diagnosis, with people aged between 65 and 69 years surviving for a median of 10.7 years, and those aged 90 years and above surviving for 3.8 years (Xie et al 2008).
Recognition of the end of life Identifying when a frail older person with dementia is nearing the end of life is not always easy. Numerous studies have attempted to identify prognostic indicators or indices that may guide when to adopt a palliative approach to care. However, these tools have been found to be more reliable for identifying people with dementia at low risk of dying than for identifying those at high risk of death (van der Steen et al 2005). A more practical and reliable approach may involve clinical judgement, discussion with families and carers, and reassessing or shifting the goals of care towards palliation, especially at times of acute, inter-current illness or care transition (van der Steen 2010). An awareness of the effects of acute illnesses as well as dementia should alert clinicians to the possibility that a person with dementia may be nearing the end of life. For example, acute physical illnesses requiring emergency hospital admission, such as pneumonia or urinary tract infection, may be indicators of imminent death in people with advanced dementia (Morrison and Siu 2000a, Mitchell et al 2009, Sampson et al 2009a). People with dementia also have a markedly increased mortality rate up to six months after hip fracture (55%) or pneumonia (53%), compared with 12% and 13% respectively in cognitively intact patients (Morrison and Siu 2000a). Shorter term mortality is also poor, with 24% of people with moderate or severe dementia dying after acute unplanned medical admissions, compared with 7.5% of those without dementia (Sampson et al 2009b). The median length of stay in UK nursing homes, where most 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 (FAST) score
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Art & science dementia series: 19 of 7c and above (Table 1), is associated with a life expectancy similar to that of well-recognised terminal diseases such as metastatic breast cancer (Mitchell et al 2009). There is little evidence to suggest that active 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). However, there is a growing interest in how a palliative approach may be beneficial for frail older people with advanced dementia.
Palliative and end of life care Historically, many older people and their carers have reported that palliative care services were unavailable to them (Cleary and Carbonne 1997). This was probably because such services focused on people with cancer and specialist needs. 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’
(Gómez-Batiste et al 2007). End of life care is defined as care that helps those with advanced, progressive, incurable illness to live as well as possible until they die. It is also important to note that end of life care ‘seeks neither to hasten death, nor to postpone it’ (Radbruch and Payne 2009). After many years of policy and guidance indicating the need for improved access to palliative and end of life care services for older people, changes have been made. The call for equal access to palliative and end of life care has been extended to include people with dementia, for example (Department of Health 2001, Davies and Higginson 2004, National Collaborating Centre for Mental Health 2006). The inclusion of dementia in palliative and end of life care policy and guidance has resulted from several contributory factors, including the increasing numbers of people with dementia, concerns about inappropriate interventions and treatments at the end of life, and discrimination that limits equal access to palliative and end of life care services (Lloyd-Williams and Payne 2002). The European Association of Palliative Care published a white paper defining the principles of palliative care for people with dementia (van der Steen et al 2014). All definitions of palliative care draw on a common approach that involves
TABLE 1 Functional assessment staging Stage
Characteristic
1
Normal ageing
No deficits whatsoever.
2
Possible mild cognitive impairment
Subjective functional deficit.
3
Mild cognitive impairment
Objective functional deficit interferes with a person’s most complex tasks.
4
Mild dementia
Instrumental activities of daily living become affected, such as bill paying, cooking, cleaning and travelling.
5
Moderate dementia
Needs help selecting proper attire.
6a
Moderately severe dementia
Needs help putting on clothes.
6b
Needs help bathing.
6c
Needs help toileting.
6d
Experiences urinary incontinence.
6e 7a
Experiences faecal incontinence. Severe dementia
Speaks five or six words during the day.
7b
Speaks only one word clearly.
7c
Can no longer walk.
7d
Can no longer sit up.
7e
Can no longer smile.
7f
Can no longer hold up head.
(Reisberg 1988)
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valuing the autonomy and dignity of patients and their families, a collaborative relationship between healthcare professionals and patients and their families, good communication, and a central goal to maintain quality of life. Such characteristics are similar to those of person-centred care (Kitwood 1997), the philosophical underpinning of most dementia care practices. However, given the similarity in the palliative and person-centred care approaches, nurses need to understand the evidence base for various end of life interventions for people with dementia.
Symptom burden in advanced dementia at the end of life In contrast to the early and middle stages of dementia, the clinical features of the advanced stages of dementia have been less researched. People with advanced dementia have a range of symptoms similar to those found in the terminal stages of cancer, including pain and dyspnoea. Pressure ulcers, agitation, difficulty in swallowing and loss of appetite are also common in people with advanced dementia as the end of life approaches.
Pain
Pain is common in people with advanced dementia, and is often under-diagnosed and under-treated (Scherder et al 2009). In retrospective interviews with relatives and carers, McCarthy et al (1997)
found that significantly more patients with dementia had reportedly experienced pain in the last six months of life compared with those with cancer (75% versus 60% respectively), and that pain control was often inadequate. Similarly, among patients with a fractured neck of femur, those with cognitive impairment received one third of the amount of analgesic as those who were cognitively intact (Morrison and Siu 2000b). No consistent evidence suggests that people with advanced dementia experience pain less intensely than others, but they have difficulties in communicating that they are in pain and staff have difficulties in interpreting their pain signals. Pain often manifests as behavioural changes, such as agitation, distress, social withdrawal, depression or resistive behaviour (Scherder et al 2009), but such changes in behaviour may be interpreted as psychological or psychiatric problems associated with dementia. The ‘gold standard’ for pain assessment is self-reporting. Contrary to popular belief, many people with moderate to severe dementia can report pain reliably (Zwakhalen et al 2006). In those with advanced dementia, use of a validated observational pain scale such as the Pain Assessment in Advanced Dementia scale may be necessary (Warden et al 2003) (Table 2). The assessment of pain in patients with advanced dementia can be complex, and it has been suggested that there is no evidence that pain produces any particular signs
TABLE 2 Pain Assessment in Advanced Dementia scale Items to be scored
0
1
2
Breathing independent of vocalisation
Normal
Occasional laboured breathing, short periods of hyperventilation.
Noisy, laboured breathing, long periods of hyperventilation, Cheyne-Stokes respiration.
Negative vocalisation
None
Occasional moan or groan, low-level speech with a negative or disapproving quality.
Repeated troubled calling out, loud moaning or groaning, crying.
Facial expression
Smiling or inexpressive
Sad, frightened, frowning.
Facial grimacing.
Body language
Relaxed
Tense, distressed, pacing, fidgeting.
Rigid, fists clenched, knees pulled up, pulling or pushing away, striking out.
Consolability
No need to console
Distracted or reassured by voice or touch.
Unable to console, distract or reassure.
Score
Total (Warden et al 2003)
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Art & science dementia series: 19 or behaviours that are unique to pain (Regnard et al 2003); these may be the result of other forms of distress, so tools such as the Disability Distress Assessment Tool may be more appropriate (Regnard et al 2007). Managing pain in people with advanced dementia requires careful assessment for possible underlying causes. This should include clinical examination, observation of behaviours at rest and during movement, and discussion with family members or staff who know the person well. The aetiology of pain may be acute, for example urine retention or fracture, or the result of a chronic cause, for example pressure ulcers, awkward positioning in a chair or bed, or arthritis (Davis and Srivastava 2003). Treating pain in people with advanced dementia requires a stepped approach (American Geriatric Society 1998). Depending on the cause, non-pharmacological interventions may be helpful, particularly if arthritis is present. This approach may include repositioning, provision of optimal seating or specialist beds, physiotherapy, massage, and heat or cold therapy. Simple analgesics, such as paracetamol or non-steroidal anti-inflammatory drugs, can be effective. Central to achieving an effective result is regular prescribing, and ‘as required medication’ is not advocated because people with advanced dementia may not request it or report that they are in pain. Analgesic prescribing and management is often not complex in this group of people (Pace and Scott 2013). A study by Husebo et al (2011) showed that regular paracetamol was effective in 63% of participants with dementia; of the 25% of participants who received opioids, only 2% had them discontinued because of side effects.
Behavioural and psychological symptoms
Behavioural and psychological symptoms of dementia are common, affecting 90% of people at some time during the course of the disease. The symptoms are distressing for the people concerned, and their families and carers, and a strong predictor of institutionalisation to nursing or residential homes (Dening and Milne 2011). Different symptoms tend to emerge at different stages of the condition, with mood disorders and depression being noted earlier in the disease course and psychotic symptoms, such as hallucinations and delusions, being more common in the moderate stages. In the advanced stages of dementia, more than half of patients can remain agitated and distressed (Mitchell et al 2009). The management of these symptoms is complex and requires a range of therapeutic approaches. Difficult behaviours such as aggression and
resistance to care may be indicators of unmet needs such as under-diagnosed or under-treated pain, delirium or infection. Patients therefore require a comprehensive assessment, which can be challenging in people with advanced dementia and limited verbal communication ability.
Eating and swallowing
People with advanced dementia often develop swallowing difficulties and historically would have received tube feeding. However, in a Cochrane review, Sampson et al (2009b) found inconclusive evidence that tube feeding improves survival time, mortality risk, nutritional parameters and incidence of pressure ulcers in people with advanced dementia, and that it may increase pulmonary secretions, incontinence, mortality and morbidity. The decision to use tube feeding is emotive and influenced by complex ethical issues, clinical need, local practice, clinician and carer preferences, and whether there are advance directives or advance care plans in place. Ethical considerations include whether the lives of people with advanced dementia should be prolonged artificially and what constitutes ‘euthanasia’ (that is, the hastening of death by withholding food and fluids). It has been argued that the absence of evidence for the benefit of tube feeding does not mean that it is inappropriate in all patients with advanced dementia and that each individual should receive holistic assessment by a specialist in swallowing (Sampson et al 2009b). A decision to forgo artificial hydration and nutrition may be misinterpreted by family carers, resulting in concern that the patient is being starved. Palecek et al (2010) argued that this might be overcome through the use of the term ‘comfort feeding’, which stresses the shift in a patient’s goals of care. Such comfort feeding is achieved through careful hand feeding.
Infections and pneumonia
Pneumonia and other infections, especially of the urinary tract, are common in patients with advanced dementia. Mitchell et al (2009) found that over an 18-month period, 53% of nursing home residents with advanced dementia had febrile episodes and 41% of residents had pneumonia at some point. Furthermore, Burns et al (1990) identified that these conditions are the immediate cause of death in up to 71% of cases. People with advanced dementia are often immobile, bed bound and at increased risk of aspiration, and they 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) found no difference
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in mortality rates between people receiving antibiotics and those receiving only palliative care. van der Steen et al (2009) found that, with or without the use of antibiotics, pneumonia can cause discomfort in people with dementia, and that antibiotics can delay death but leave patients exposed to the risk of further pain while prolonging the dying phase. In such situations, adequate symptom control through the use of analgesia may be appropriate.
Supporting families affected by dementia Dementia affects whole families, and people close to those with dementia often find themselves providing increasing amounts of care and support as the disease progresses. Therefore, those delivering care must be mindful of the whole family unit and the relationships between family members. According to one study using a rapid participatory appraisal method (Harrison Dening et al 2012, Sampson et al 2012), health and social care professionals, such as district nurses, care managers, palliative care team and GPs, were keen to provide better quality end of life care to people with dementia. All were acutely aware of the limitations in their knowledge and skills, and in the health and social care system in which they worked. Many of the barriers preventing delivery of high quality end of life care for people with dementia highlighted in the studies were associated with lack of inter-agency communication, not having a clear dementia care pathway and a sense of helplessness.
Care management
Interest in adopting a ‘care management’ approach for families affected by dementia is growing, and the approach is being increasingly considered essential to meet the palliative and end of life care needs of people with dementia and their family carers (Judd et al 2011). Such an approach would entail detailed assessment of the needs of each person with dementia and their carers, and co-ordination of care and support from health, social and voluntary care services. As such, the approach can be a significant determinant of how well carers adapt to their caring roles (Hibberd 2011). However, while care management in dementia works best if it is available throughout the progression of the disease and involves support for families to deal with their sense of loss, equitable access to this approach is patchy across the UK (Harrison Dening 2010). Admiral Nursing provides care management throughout the progression of the illness (Box 1) (Harrison Dening 2010). Following diagnosis, appropriate follow up is essential to
support prognosis, discuss issues of legal and financial planning, advise on the next steps, start discussions about advance care planning, and continue liaison with local services. As the disease progresses, nursing and allied healthcare input depends largely on symptoms and their management. By providing information and guidance in the context of continuing professional support, Admiral nurses can support family carers more successfully and reduce their anxiety (Wills and Woods 1998). A distinct advantage of the Admiral Nursing service is the long-term nature of their work with families of people with dementia, which is of particular value during transitions from the community to the care home (Harrison Dening 2010).
Interventions and treatment at the end of life
Despite the high mortality rate associated with advanced dementia, particularly for those who are admitted to acute hospitals, people with dementia receive as many painful investigations and procedures, and are more likely to be physically restrained, than patients who are cognitively intact (Morrison and Sui 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 prognostically to have a terminal illness or to be near to death. This perception may be a result of poor understanding of the pathophysiology of dementia among healthcare professionals (Thuné-Boyle et al 2010). Other vital components of effective end of life and
BOX 1 Admiral Nursing approach Admiral nurses are registered nurses specialising in dementia care. With help from other healthcare professionals, they work with people with dementia and their family carers in a variety of settings to improve their quality of life throughout the dementia journey. Admiral nurses: Provide psychological support to help people with dementia and their family carers to understand and deal with their feelings. Help families to understand dementia and undertake a range of interventions that help people to live well with the disease, and develop skills to improve communication and maintain relationships. Are an invaluable source of contact and support for families at specific points of difficulty, such as when the disease is diagnosed, when it advances, and when difficult decisions about, for example, transitions into care establishments must be made. Advise on referrals to other appropriate services and liaise with other healthcare professionals on behalf of families. Provide care co-ordination to family carers, especially palliative and end of life care, and bereavement support after the death of people with dementia. (Harrison Dening 2010)
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Art & science dementia series: 19 person-centred care are also often neglected, with little acknowledgement of spiritual needs, withdrawal of inappropriate medications or referral to hospital palliative care teams (Sampson et al 2006). Similarly, people dying with dementia in nursing homes often receive burdensome interventions. Mitchell et al (2009) found, for example, that 29% of people with dementia had received enteral tube nutrition and 12.4% of individuals had been admitted to hospital. The evidence base for palliative care for people with dementia is somewhat limited when compared with that for palliative care for those with other conditions, such as cancer. Systematic reviews show how care mainly focuses on specific interventions, such as fever management or pain control, or on the withdrawal of care, such as the prescribing of antibiotics, rather than on a more active palliative model (Sampson et al 2005, Goodman et al 2010). However, there is sufficient evidence to justify making significant changes to support for
people as they stop living with dementia and start dying with dementia.
Conclusion Person-centred care and effective palliative care for people with dementia require a more rounded approach. People with dementia and multiple morbidities require multi-component or complex interventions that in turn necessitate the engagement of a range of specialties. This engagement can be co-ordinated to ensure the delivery of high quality palliative and end of life care, but all clinicians must understand that dementia is a life-limiting disease and when the goals of treatment should become the goals of palliation NS Acknowledgement Nursing Standard wishes to thank Karen Harrison Dening, Head of Research and Evaluation, Dementia UK, for co-ordinating and developing the Dementia series.
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