Review
Palliative care for people with dementia: a literature review Sue Lillyman and Mary Bruce
With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; undertreatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making. Key words: Dementia, l Palliative care l Advance plans l Advance directives l End of life This article has been subject to double-blind peer review.
W
Sue Lillyman, Senior Lecturer; Mary Bruce, Senior Lecturer; both at the University of Worcester, Worcester, UK Correspondence to: [email protected]
76
ith the number of people living with dementia worldwide estimated to rise to 135.5 million by 2050 (Alzheimer’s Disease International, 2015) there is also a growing number of people dying with, and from, dementia. In England and Wales, for the second year running dementia, and Alzheimer’s disease has been the top leading cause of death for women (Office for National Statistics, 2013), with an estimated one in three people dying with dementia each year in the UK (Department of Health (DH), 2013). Therefore, there is an urgent need for palliative care provision for people with end-stage dementia (Birch and Draper 2008) and services to support the person and family through their dementia journey to death. However, people with dementia are possibly receiving different end-of-life care to people who are cognitively intact (Afzal et al, 2010; Chung, 2013) as well as having less access to goodquality palliative care specialists (Ouldred and Bryant, 2008). When reviewing the palliative care provision for this group the themes identified in the literature highlight some of the barriers faced by people with dementia and their families. The two main themes include diagnosis of the dying phase and appropriate timing of referral to specialist
palliative care services. Other areas included: ●●Ethical decisions in relation to medication and nutrition at end of life ●●The environment ●●Under, over and burdensome treatment interventions ●●Carer involvement ●●Collaborative working ●●Family needs ●●Advance decision making.
Methodology The literature review was completed via a search for journal articles published between 2004 and 2014. Studies were included from a variety of countries, with an initial 98 articles that referred to end of life and dementia found using online search engines ‘Academic Search Complete’, CINAHL and MEDLINE. Themes were identified using Thomas and Harden’s (2008) thematic-synthesis method. For the purpose of this review the term ‘dementia’ has been used to incorporate all types of dementias, for example: Alzheimer’s disease, Lewy body, frontotemporal lobe, etc. Although they may all follow different disease trajectories the final stage will follow a similar pathway.
Diagnosis of the dying phase Until recent years, dementia has been relatively under recognised as a terminal illness and rarely cited as an immediate cause of death (Ryan et al, 2012; Mitchell et al, 2012; Nazarko, 2014). Authors argue that to provide adequate care in the end stage the condition must first be recognised as the terminal illness that it is (Bloomer et al, 2012; Ryan et al, 2012; van der Steen et al, 2013). However, Parsons et al (2010) and Dempsey (2013) note a recent change in that there is an increase in the condition being included within the realm of life-limiting conditions and terminal illness, and van der Steen (2010) argues that this will improve further over the next few decades. However, the need for palliative care for this client group remains problematic owing to difficulties in identifying
© 2016 MA Healthcare Ltd
Abstract
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
the ‘end stage’ of dementia (Barber and Murphy 2011; Bloomer et al, 2012). The main difficulty lies in identifying the difference between ‘advanced dementia’ and ‘end stage’. This is further complicated at the ‘end stage’. This can be a transient phase due to infection, rather than the final stage of the condition, or equally infection, may be the cause of death, with rapid entry to end stage in the person with dementia (Barber and Murphy, 2011). With a lack of agreement across the literature, Brown et al (2013) note that a consensus of these stages is still being debated and suggest that there needs to be a consistent definition of the ‘advanced stage of dementia’.
Advanced stage Some authors, such as Chang et al (2009) and Long (2009), use examination scores to define ‘advanced stage’, stating that this stage is when the person has a Mini Mental Score Examination (MMSE) below 10. Other authors base their diagnosis on symptoms such as: loss of thirst, hunger drives and ability to swallow; difficulty with mobility and communication (Chung, 2012; 2013; Nazarko, 2009a; Parker and Power, 2013); and an inability to perform activities of daily living, with severe memory loss of both present and past events (Long, 2009). However these symptoms are often complicated by multiple pathologies, cognitive changes and communication difficulties, according to Kristjanson et al (2005). In a further attempt to help with the recognition of the different stages of dementia, de Leon and Reisberg (1999) produced a sevenstage Global Deterioration Scale using symptoms to differentiate each stage. However, as Mitchell et al (2012) note, these scales are only moderately accurate in their predictions and, therefore, are limited in their ability to help diagnose the stage of the condition.
© 2016 MA Healthcare Ltd
End stage The ‘end stage’ is equally difficult to diagnose owing to the slow incremental decline in the person with dementia (Nazarko, 2009b; Ryan et al, 2009; Thomas, 2010). The exact point at which a person enters this end stage remains unclear (Ryan et al, 2009) with no agreed definition. Again Chang et al (2009) used the MMSE as a marker by stating that when it is too low to score, and therefore presumed zero, the person is in the ‘end stage’ of the condition. However, other authors use symptoms such as poor level of consciousness, eye contact, speech, muscle flexibility and swallowing (Ryan et al,
International Journal of Palliative Nursing 2016, Vol 22, No 2
2 0 0 9 ) , t o t a l d e p e n d e n c y, p r o b l e m a t i c dehydration and nutrition (Chung, 2012), pain, mental confusion, urinary incontinence, low mood, constipation and loss of appetite (Barber and Murphy, 2011) and weight loss (Chung 2012). Kapo et al (2007) suggest that when the person is asleep more of the time than awake he or she is likely to die within 6 months. Whatever diagnosis scale is used Chatterjee (2008) indicates the ‘end stage’ can often be protracted and, as Bracegirdle (2012) puts forward, end of life symptoms with dementia are less predictable than those without dementia. It is the lack of this recognition of the ‘end stage’ that, according to Kapo et al (2007), often results in inadequate end-of-life care for the person with dementia. Birch and Stokoe (2010) suggest this stage can last as long as 2–3 years. This diagnostic uncertainty can be an important barrier to identifying specialist palliative care services (Bloomer et al, 2012), and without being able to recognise impending death, professionals can fail to alter care priorities appropriately (Monroe and Hansford, 2010). People may also be denied appropriate opportunities to die in their preferred place while receiving the right care (Nazarko, 2014), and Thomas (2010) found that if the end stage can be identified earlier then crisis can be avoided.
❛There is growing evidence that people with dementia will benefit from palliative care.❜
Palliative care for people with dementia There is growing evidence that people with dementia will benefit from palliative care (Chang et al, 2009; Nazarko 2009b); however, there is no consensus among experts as to the stage at which this should be provided. van der Steen et al (2014) suggest that palliative care should be at all stages but more so in the ‘severe stage’. Long (2009) and Nazarko (2009b) argue that palliative care should be provided long before death, while National Institute for Health and Care Excellence (2006) guidelines suggest it should commence at diagnosis. However, McCarron et al (2011) are not sure about the role of palliative care at the early stages of dementia. Anderson and Goldstein (2012) also found that there is a lack of randomised controlled trial evidence to prove the effectiveness in delivering palliative care simultaneously with disease modifying treatment in people with advanced illness.
Referral to specialist palliative care Although there remains debate on when to commence palliative care it is agreed that it is the right of all people with dementia to have access
77
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
to high-quality specialist palliative care services (Birch and Draper, 2008). The National Council for Palliative Care (2015) noted that all palliative services should be flexible and adaptable to the changing needs for people with dementia. However, they also argue that dementia is a specialist area of care that requires the dementia and palliative care teams to work and learn from each other in order to provide a specialist palliative care service. Through this collaboration the care setting for the person receiving palliative care can be in their preferred place of care and provided by the appropriate professional practitioners for that person. However, the referral to specialist palliative care services is also difficult; Afzal et al (2010) found people with dementia are less likely to be referred to specialist palliative care. They reported that this, in part, is owing to barriers associated with timely and appropriate transitions due to the lack of identifying the end stage, as noted above. This failure of transition can also be, in part, attributed to cultural (ideas, values and practices) and systematic aspects of service infrastructures. Nazarko (2009a) also noted other barriers, including pressure for inappropriate treatment, lack of information about the person’s wishes and poor care planning. As Beamer (2011) argued it is often more difficult to get off a rehabilitation/treatment pathway and onto a palliative care pathway for the person with dementia.
Environment DeRoo et al (2014) identified that little is known about people with dementia and their wishes in relation to the place of death. Dying at home, according to McCarron et al (2011), should be a realistic factor for all. However, for people with dementia this choice, in part, is limited because of the unpredictability of the disease trajectory, making prognosis difficult and therefore leading to inappropriate admissions to hospital at the end stages of the condition (Birch and Draper, 2008). Although there has been a great deal of change within acute care settings they are still lacking when it comes to caring for the person with dementia, according to Robinson and Tyndale-Biscoe (2014). Morris et al (2013) argued that the number of people dying with dementia in acute settings needs to be reduced, and McCarron et al (2011) noted that moving people from their home at this stage can be very distressing for the person and family. Wherever the person is cared for the environment should be therapeutic, calm and respectful (Bracegirdle, 2012), comfortable and include activities
78
(Beamer, 2011). Bloomer et al (2012) also raised concerns about the unique social, cognitive and behavioural issues of a person with dementia in a palliative care setting and in sub-acute care, where care is focused on functional rehabilitation. Bracegirdle (2012) suggested that a loss of mental ability can impact on end of life and the environment in which a person with dementia dies. Bloomer et al (2012) argue that there remains a dilemma for where the ideal care should, and can, be provided for people with dementia. Birch and Draper (2008) go on to suggest that the place for end-of-life care should be considered carefully and early in the persons journey. Bloomer et al (2012) also highlight that the introduction of dying pathways can assist with quality of life irrespective of the environment.
Undertreatment Mahon and Sorrell (2008) noted the risk of undertreating people with dementia at the end stage because of the lack of knowledge in relation to the complexity and nuances of the condition. Pain management in particular is considered a major concern (Small, 2007; Chang et al, 2009), which if left untreated could result in delirium (Chung, 2013). However, as Bracegirdle (2012) pointed out, giving analgesia can also increase confusion, sedation and possibly opioid toxicity making the decision harder for the prescribers. Chatterjee (2008) noted that poor cognition ability can result in people with dementia being unable to verbalise their pain, discomfort and emotional anguish. Symptoms can be missed and misunderstood (Bracegirdle, 2012), especially when the person can no longer communicate (Monroe and Hansford, 2010; van der Steen, 2010). At this stage specialist pain-assessment tools that include behavioural cues should be used (Barber and Murphy, 2011; Beamer, 2011). Afzal et al (2010) also found that people in the advanced and end stage of dementia were less likely to be prescribed palliative drugs. They are not always offered medication for symptom control that could alleviate suffering in the same way as that in other patients at end of life (Chung, 2013), and they are assessed for palliative outcomes lower than other patients in relation to anxiety, support and self-worth (Brandt et al, 2005).
Over burdensome treatment Many authors note that during the terminal stage, some people with dementia also continue to receive burdensome aggressive treatment
© 2016 MA Healthcare Ltd
❛People with dementia are less likely to be referred to specialist palliative care.❜
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
(Chung, 2012; Nazarko, 2014). These include artificial or enteral feeding (Chatterjee, 2008; Kapo et al, 2007), arterial blood sampling (Sampson et al, 2008), sedation (Congedo, 2010) and the use of antibiotics (Ryan et al, 2009), as well as resuscitation (Sampson et al, 2008). This, in part, is due to the tension between prolonging life and palliative care at end of life (Torke, 2014) and includes artificial feeding (Barber and Murphy, 2011; Beamer, 2011), especially in ethnic minority groups (Connolly et al 2012), and inappropriate hospitalisation, which may result in inappropriate restraints being used (Beamer, 2011). One of the key challenges is to decrease burdensome treatment and provide a palliativecare approach that focuses on pain and symptom management (Ouldred and Bryant, 2008).
Nutrition and hydration Problems with eating and swallowing are often symptoms of the terminal stage of dementia (Parker and Power, 2013) as well as loss of hunger and thirst drives (Chung, 2013), which can result in ethical and practical dilemmas for health professionals and the patients’ family (Barber and Murphy, 2011). Many authors feel that the use of artificial feeding is not appropriate or beneficial when swallowing problems develop and note that disinclination to eat is a result of the advanced disease (Barber and Murphy, 2011; Parker and Power, 2013) as opposed to a transient phase, which remains an area of contention (Birch and Stokoe, 2010; Congedo et al, 2010). However, Barber and Murphy (2011) remind us of the need for comfort feeding and fluids that should continue to be offered as long as the person shows an interest. Acreman (2009) argued that although nutrition cannot prolong life, it can enable and empower people to optimise physical strength.
© 2016 MA Healthcare Ltd
Ethical decisions Assessing the needs for the person with dementia at the end of life is complex (Sampson et al, 2008) and sometimes decisions are influenced to a greater extent by fears of legal consequences in the case of complications (Birch and Draper, 2008). Therefore, as Gillick (2012) points out, dementia care can raise special ethical issues due to the kind of suffering it engenders with the loss of selfcontrol, capacity for decision making and lack of the appropriate environment for end of life. Many of the ethical decisions in end-of-life care of the person with dementia are also related to the starting of aggressive treatment and stopping of other treatment.
International Journal of Palliative Nursing 2016, Vol 22, No 2
Other areas include the use of antibiotics (Ryan et al, 2009), resuscitation (Sampson et al, 2008) removal of drugs (Parsons et al, 2010) and generally withholding or withdrawing treatment (Parsons et al, 2010), as well as problems with consent and adherence to treatment (Bracegirdle, 2012). These, according to Chang et al (2009), can have conflicting perspectives between law, expectations, policies and the person’s wishes. Although the lack of alignment between the philosophical and clinical perspectives on ethical decision making is challenging Beamer (2011) found that specialist palliative care can promote and assist with ethical decisions.
❛Family and carers should be involved in care to provide better individualised person-centred care.❜
Carer involvement Family and carers should be involved in care to provide better individualised person-centred care (Birch and Draper, 2008). Birch and Stokoe (2010) argue that the carers’ help is crucial, as they are closest to the person and they have a greater understanding of the wishes of the person. This personal knowledge includes reading cues as well as religious, social and cultural expectations that can then inform treatment. This according, to Chung (2013), is especially important around the provision of food and feeding. According to Monroe and Hansford (2010) communication with families about planning for future care and weighing up treatment choices remains very poor, and families often want more information about the condition and the prognosis (van der Steen, 2010; Chung 2013). Denning et al (2013) also suggested that educating carers is essential to improving end-of-life care as they may be making choices that are based on in their own experiences rather than what is best for the person with dementia. Families are often not always aware of the terminal nature of dementia (Sampson et al 2008), and as Chatterjee et al (2008) stated, it is often difficult for relatives to understand the disease trajectory. This lack of understanding can affect how dying people and their families cope with death (Nazarko, 2009b). Therefore when the family’s perception is that a person can die of dementia there is often an increase in the person’s comfort in the dying process (van der Steen et al, 2013).
Collaborative care Birch and Draper (2008) recommend that clinicians and patient groups must work together with specialist services and health commissioners to develop, fund and evaluate cost-effective services that meets the needs of the person with dementia and that of the person’s family.
79
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
Although many people with dementia, according to Small (2007), can fall between the gap between palliative care services and expert dementia care specialists at the end of life, best care should involve a collaboration of these specialists (Bloomer et al, 2012; Beamer, 2011; McCarron et al, 2011). This includes working with the carers (van der Steen, 2010), people and staff who know the person well to deliver the specialist care required (McCarron et al, 2011).
Advance-care planning According to Denning et al (2013), van der Steen et al (2013) and Vandervoort et al (2014) advanced care plans (ACPs) and directives are central to good palliative care, facilitating choice and quality of dying. However, ACPs are often not completed because of the unusual diagnosis (Congedo et al, 2010), lack of GP knowledge about treatment options (de Vleminck et al, 2014) and appropriate time for discussion (Engle et al, 2006). ACPs play a key role in care (Kapo et al, 2007; Parker and Power, 2013) and are reported to lower the levels of emotional distress for families at end of life (Vandervoort et al, 2014), reduce the incidence of emergency admissions to acute care settings and result in better carer bereavement (Sampson et al, 2008). They also provide some autonomy for personal choices once decision-making capabilities are lost (Chatterjee, 2008) as well as help to guide care (Mitchell et al, 2012). Dempsey (2013), and the DH (2013) suggest ACPs need to be carried out early in the disease trajectory; however, Birch and Draper (2008) recommend timely and appropriate communication, including consideration of the place, but Nazarko (2014) argues these should not be left until a crisis point.
Conclusion Bracegirdle (2012) sums up palliative care for the person dying with dementia as a fundamental right to die with dignity and to be safe and protected from harm. Also, as highlighted by Beamer (2011), personhood should be maintained until the end, affirming the values of the person and his or her life. While noting that palliative care is everybody’s right, for the person dying with dementia, several issues have been highlighted through this review. These include the need of recognition that dementia is a terminal illness; that ethical decisions need addressing; that the environment is important and that good palliative care involves collaboration between palliative care services and dementia care experts, as well as
80
collaboration and support of the carer and family member. Conflicts of interest The authors have no conflicts of interest to declare Acreman S (2009) Nutrition in palliative care. Br J Community Nurs 14(10): 427–31 Afzal N, Buhagiar K, Flood J et al (2010) Quality of end-oflife care for dementia patients during acute hospital admission: a retrospective study in Ireland. Gen Hosp Psychiatry 32(2): 141–6 Alzheimer’s Disease International (2015) Dementia statistics. www.alz.co.uk/research/statistics (accessed on 22 January 2016) Anderson WG, Goldstein NE (2012) Update in Hospice and Palliative Care. J Palliat Med 15(2): 236–41 Barber J, Murphy K (2011) Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia. Int J Palliat Nurs 17(12): 567–91 Beamer K (2011) Providing optimal care to patients with dementia. Nurs N Z 17(9): 20–2 Bloomer M, Tan H, O’Connor M et al (2012) Managing terminal dementia. Aust Nurs J 19(9): 36–7 Birch D, Draper J (2008) A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 17(9): 1144–63 Birch D, Stokoe D (2010) Caring for people with end-stage dementia. Nurs Older People 22(2): 31–6 Bracegirdle LR (2012) A tormented death: end-of-life care for people with dementia. Br J Nurs 21(12): 723–7 Brandt HE, Deliens L, van der Steen JT et al (2005) The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale. Palliat Med 19(4): 334–42 Brown MA, Sampson EL, Jones L, Anna M Barron AM (2013) Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med 27(5): 389–400 Chang E, Daly J, Johnson A et al (2009) Challenges for professional care of advanced dementia. Int J Nurs Pract 15(1): 41–7 Chatterjee J (2008) End-of-life care for patients with dementia. Nurs Older People 20(2): 29–34 Chung AM (2012) Percutaneous gastrostomy feeding tubes in end stage dementia: don’t ‘just do it’. Can Assoc Radiol J 63(3 Suppl): S5–6 Chung AM (2013) End-stage dementia and palliative care. BC Med J 55(6): 287–91 Congedo M, Causarano RI, Alberti F et al (2010) Ethical issues in end-of-life treatments for patients with dementia. Eur J Neurology 17(6): 774–9 Connolly AL, Sampson El, Purandare N (2012) End-of-life care for people with dementia from ethnic minority groups: a systematic review. J Am Geriatr Soc 60(2): 351–60 de Leon MJ, Reisberg B (1999) An Atlas of Alzheimer’s Disease (Encyclopaedia of Visual Medicine Series). Parthenon Publishing, Carnforth Dempsey D (2013) Advance care planning for people with dementia: benefits and challenges. Int J Palliat Nurs 19(5): 227–34 Denning KH, Jones L, Sampson EL (2013) Preferences for endof-life care: a nominal group study of people with dementia and their family carers. Palliat Med 27(5): 409–17 Department of Health (2013) Dementia: A state of the nation report on dementia care and support in England. http://tinyurl.com/k6l39nk (accessed 21 January 2016) De Roo ML, van der Steen JT, Garre GF et al (2014) When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings. Palliat Med 28(3): 210–9 De Vleminck A, Pardon K, Beernaert K et al (2014) Barriers to advance care planning in cancer, heart failure and
© 2016 MA Healthcare Ltd
❛Problems with eating and swallowing are often symptoms of the terminal stage of dementia ... ❜
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
dementia patients: a focus group study on general practitioners’ views and experiences. PLoS ONE 9(1): e84905. doi:10.1371/journal.pone.0084905 Engel, SE, Kiely, DK, Mitchell SL (2006) Satisfaction with end-of-life care for nursing home residents with advanced dementia. J Am Geriatr Soc 54(10): 1567–72 Gillick MR (2012) Doing the right thing: a geriatrician’s perspective on medical care for the person with advanced dementia. J Law Med Ethics 51–6 Kapo J, Morrison LJ, Liao S (2007) Palliative care for the older adult. J Palliat Med 10(1):185–209 Kristjanson LJ, Walton J, Toye C (2005) End-of-life challenges in residential aged care facilities: a case for a palliative approach to care. Int J Palliat Nurs 11(3): 127–9 Long CO (2009) Palliative care for advanced dementia approaches that work. J Gerontol Nurs 35(11): 19–24 Mahon MM, Sorrell JM (2008) Palliative care for people with Alzheimer’s disease. Nurs Philos 9(2): 110–20 McCarron M, McCallion P, Fahey-McCarthy E, Connaire K (2011) The role and timing of palliative care in supporting persons with intellectual disability and advanced dementia. J App Res Intellect Disabil 24(3): 189–98 Mitchell SL, Black BS, Ersek M et al (2012) Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med 156(1): 45–51 Monroe B, Hansford P (2010) Challenges in delivering palliative care in the community—a perspective from St Christopher’s Hospice, London, UK. Prog Palliat Care 18(1): 9–13 Morris ZS, Fyfe M, Momen N, Hoare S, Barclay S (2013) Understanding hospital admissions close to the end of life (ACE) study. BMC Health Serv Res. doi: 10.1186/14726963-13-89 Nazarko L (2009a) A time to live and a time to die: palliative care in dementia. Nurs Resid Care 11(8): 399–402 Nazarko L (2009b) Dying trajectories and palliation in a care home setting. Nurs Resid Care 11(12): 613–7 Nazarko L (2014) Quality palliative care for the person with dementia. Br J Healthcare Assistants 8(02): 74–9 National Council for Palliative Care (2015) Dementia. Achieving a good death for people with dementia. www. ncpc.org.uk/dementia (accessed on 22 January 2016) National Institute for Health and Care Excellence (NICE) (2006) Dementia, supporting people with dementia and their carers in health and social care. http://tinyurl.com/ qbu46qu (accessed on 22 January 2016) Office for National Statistics (2013) What are the top causes of death by age and gender? http://tinyurl.com/msz9omp (accessed on 22 January 2016) Ouldred E, Bryant C (2008) Dementia care. Part 3: end-oflife care for people with advanced dementia. Br J Nurs 17( 5): 308–14
Parker M, Power D (2013) Management of swallowing difficulties in people with advanced dementia. Nurs Older People 25(2): 26–31 Parsons C, Hughes CM, Passmore AP, Lapane KL (2010) Withholding, discontinuing and withdrawing medications in dementia patients at the end of life a neglected problem in the disadvantaged dying? Drugs Aging 27(6): 365–499 Robinson P, Tyndale-Biscoe J (2014) What Makes a Top Hospital? Dementia Care. http://tinyurl.com/j5r2tq9 (accessed on 22 January 2016) Ryan T, Ingleton C, Gardiner C et al (2009) Supporting people who have dementia to die with dignity. Nurs Older People 21(5): 18–23 Ryan T, Gardiner C, Bellamy G et al (2012) Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff. Palliat Med 26(7): 879–86 Sampson EL, Thuné-Boyle I, Kukkastenvehmas R et al (2008) Palliative care in advanced dementia: a mixed methods approach for the development of a complex intervention. BMC Palliat Care 7: 8 doi:10.1186/1472684X-7-8 Small N (2007) Living well until you die quality of care and quality of life in palliative and dementia care. Ann NY Acad Sci 1114: 194–203 Thomas K (2010) Using prognostic indicator guidance to plan care for final stages of life. Primary Health Care 20(6): 25–8 Thomas J, Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 8(45): doi: 10.1186/14712288-8-45 Torke AM (2014) Building the evidence base for palliative care and dementia. Palliat Med 28(3): 195–6 van der Steen JT (2010) Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 22(1): 37–55 van der Steen JT, Onwuteaka-Philipsen BD, Knol DK et al (2013) Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study BMC Med 11:105 doi: 10.1186/1741-7015-11105 van der Steen JT, Radbruch L, Hertogh C 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. Palliat Med 28(3): 197–209 Vandervoort A, Houttekier D, Vander Stichele R et al (2014) Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study. PLoS One 9(3): doi:10.1371/journal.pone.0091130
❛Families are often not always aware of the terminal nature of dementia.❜
Book reviews
© 2016 MA Healthcare Ltd
International Journal of Palliative Nursing welcomes suggestions for titles to review that are likely to be of interest to palliative nurses and students. We are also keen to hear from clinicians or educators who would be interested in reviewing books. Guidelines are available. To register an interest please email [email protected] with details of your area of expertise, or write to:
The Editor, International Journal of Palliative Nursing, MA Healthcare Limited, St Jude’s Church, Dulwich Road, Herne Hill, London, SE24 0PB
International Journal of Palliative Nursing 2016, Vol 22, No 2
81
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Palliative care for people with dementia: a literature review Sue Lillyman and Mary Bruce
With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; undertreatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making. Key words: Dementia, l Palliative care l Advance plans l Advance directives l End of life This article has been subject to double-blind peer review.
W
Sue Lillyman, Senior Lecturer; Mary Bruce, Senior Lecturer; both at the University of Worcester, Worcester, UK Correspondence to: [email protected]
76
ith the number of people living with dementia worldwide estimated to rise to 135.5 million by 2050 (Alzheimer’s Disease International, 2015) there is also a growing number of people dying with, and from, dementia. In England and Wales, for the second year running dementia, and Alzheimer’s disease has been the top leading cause of death for women (Office for National Statistics, 2013), with an estimated one in three people dying with dementia each year in the UK (Department of Health (DH), 2013). Therefore, there is an urgent need for palliative care provision for people with end-stage dementia (Birch and Draper 2008) and services to support the person and family through their dementia journey to death. However, people with dementia are possibly receiving different end-of-life care to people who are cognitively intact (Afzal et al, 2010; Chung, 2013) as well as having less access to goodquality palliative care specialists (Ouldred and Bryant, 2008). When reviewing the palliative care provision for this group the themes identified in the literature highlight some of the barriers faced by people with dementia and their families. The two main themes include diagnosis of the dying phase and appropriate timing of referral to specialist
palliative care services. Other areas included: ●●Ethical decisions in relation to medication and nutrition at end of life ●●The environment ●●Under, over and burdensome treatment interventions ●●Carer involvement ●●Collaborative working ●●Family needs ●●Advance decision making.
Methodology The literature review was completed via a search for journal articles published between 2004 and 2014. Studies were included from a variety of countries, with an initial 98 articles that referred to end of life and dementia found using online search engines ‘Academic Search Complete’, CINAHL and MEDLINE. Themes were identified using Thomas and Harden’s (2008) thematic-synthesis method. For the purpose of this review the term ‘dementia’ has been used to incorporate all types of dementias, for example: Alzheimer’s disease, Lewy body, frontotemporal lobe, etc. Although they may all follow different disease trajectories the final stage will follow a similar pathway.
Diagnosis of the dying phase Until recent years, dementia has been relatively under recognised as a terminal illness and rarely cited as an immediate cause of death (Ryan et al, 2012; Mitchell et al, 2012; Nazarko, 2014). Authors argue that to provide adequate care in the end stage the condition must first be recognised as the terminal illness that it is (Bloomer et al, 2012; Ryan et al, 2012; van der Steen et al, 2013). However, Parsons et al (2010) and Dempsey (2013) note a recent change in that there is an increase in the condition being included within the realm of life-limiting conditions and terminal illness, and van der Steen (2010) argues that this will improve further over the next few decades. However, the need for palliative care for this client group remains problematic owing to difficulties in identifying
© 2016 MA Healthcare Ltd
Abstract
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
the ‘end stage’ of dementia (Barber and Murphy 2011; Bloomer et al, 2012). The main difficulty lies in identifying the difference between ‘advanced dementia’ and ‘end stage’. This is further complicated at the ‘end stage’. This can be a transient phase due to infection, rather than the final stage of the condition, or equally infection, may be the cause of death, with rapid entry to end stage in the person with dementia (Barber and Murphy, 2011). With a lack of agreement across the literature, Brown et al (2013) note that a consensus of these stages is still being debated and suggest that there needs to be a consistent definition of the ‘advanced stage of dementia’.
Advanced stage Some authors, such as Chang et al (2009) and Long (2009), use examination scores to define ‘advanced stage’, stating that this stage is when the person has a Mini Mental Score Examination (MMSE) below 10. Other authors base their diagnosis on symptoms such as: loss of thirst, hunger drives and ability to swallow; difficulty with mobility and communication (Chung, 2012; 2013; Nazarko, 2009a; Parker and Power, 2013); and an inability to perform activities of daily living, with severe memory loss of both present and past events (Long, 2009). However these symptoms are often complicated by multiple pathologies, cognitive changes and communication difficulties, according to Kristjanson et al (2005). In a further attempt to help with the recognition of the different stages of dementia, de Leon and Reisberg (1999) produced a sevenstage Global Deterioration Scale using symptoms to differentiate each stage. However, as Mitchell et al (2012) note, these scales are only moderately accurate in their predictions and, therefore, are limited in their ability to help diagnose the stage of the condition.
© 2016 MA Healthcare Ltd
End stage The ‘end stage’ is equally difficult to diagnose owing to the slow incremental decline in the person with dementia (Nazarko, 2009b; Ryan et al, 2009; Thomas, 2010). The exact point at which a person enters this end stage remains unclear (Ryan et al, 2009) with no agreed definition. Again Chang et al (2009) used the MMSE as a marker by stating that when it is too low to score, and therefore presumed zero, the person is in the ‘end stage’ of the condition. However, other authors use symptoms such as poor level of consciousness, eye contact, speech, muscle flexibility and swallowing (Ryan et al,
International Journal of Palliative Nursing 2016, Vol 22, No 2
2 0 0 9 ) , t o t a l d e p e n d e n c y, p r o b l e m a t i c dehydration and nutrition (Chung, 2012), pain, mental confusion, urinary incontinence, low mood, constipation and loss of appetite (Barber and Murphy, 2011) and weight loss (Chung 2012). Kapo et al (2007) suggest that when the person is asleep more of the time than awake he or she is likely to die within 6 months. Whatever diagnosis scale is used Chatterjee (2008) indicates the ‘end stage’ can often be protracted and, as Bracegirdle (2012) puts forward, end of life symptoms with dementia are less predictable than those without dementia. It is the lack of this recognition of the ‘end stage’ that, according to Kapo et al (2007), often results in inadequate end-of-life care for the person with dementia. Birch and Stokoe (2010) suggest this stage can last as long as 2–3 years. This diagnostic uncertainty can be an important barrier to identifying specialist palliative care services (Bloomer et al, 2012), and without being able to recognise impending death, professionals can fail to alter care priorities appropriately (Monroe and Hansford, 2010). People may also be denied appropriate opportunities to die in their preferred place while receiving the right care (Nazarko, 2014), and Thomas (2010) found that if the end stage can be identified earlier then crisis can be avoided.
❛There is growing evidence that people with dementia will benefit from palliative care.❜
Palliative care for people with dementia There is growing evidence that people with dementia will benefit from palliative care (Chang et al, 2009; Nazarko 2009b); however, there is no consensus among experts as to the stage at which this should be provided. van der Steen et al (2014) suggest that palliative care should be at all stages but more so in the ‘severe stage’. Long (2009) and Nazarko (2009b) argue that palliative care should be provided long before death, while National Institute for Health and Care Excellence (2006) guidelines suggest it should commence at diagnosis. However, McCarron et al (2011) are not sure about the role of palliative care at the early stages of dementia. Anderson and Goldstein (2012) also found that there is a lack of randomised controlled trial evidence to prove the effectiveness in delivering palliative care simultaneously with disease modifying treatment in people with advanced illness.
Referral to specialist palliative care Although there remains debate on when to commence palliative care it is agreed that it is the right of all people with dementia to have access
77
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
to high-quality specialist palliative care services (Birch and Draper, 2008). The National Council for Palliative Care (2015) noted that all palliative services should be flexible and adaptable to the changing needs for people with dementia. However, they also argue that dementia is a specialist area of care that requires the dementia and palliative care teams to work and learn from each other in order to provide a specialist palliative care service. Through this collaboration the care setting for the person receiving palliative care can be in their preferred place of care and provided by the appropriate professional practitioners for that person. However, the referral to specialist palliative care services is also difficult; Afzal et al (2010) found people with dementia are less likely to be referred to specialist palliative care. They reported that this, in part, is owing to barriers associated with timely and appropriate transitions due to the lack of identifying the end stage, as noted above. This failure of transition can also be, in part, attributed to cultural (ideas, values and practices) and systematic aspects of service infrastructures. Nazarko (2009a) also noted other barriers, including pressure for inappropriate treatment, lack of information about the person’s wishes and poor care planning. As Beamer (2011) argued it is often more difficult to get off a rehabilitation/treatment pathway and onto a palliative care pathway for the person with dementia.
Environment DeRoo et al (2014) identified that little is known about people with dementia and their wishes in relation to the place of death. Dying at home, according to McCarron et al (2011), should be a realistic factor for all. However, for people with dementia this choice, in part, is limited because of the unpredictability of the disease trajectory, making prognosis difficult and therefore leading to inappropriate admissions to hospital at the end stages of the condition (Birch and Draper, 2008). Although there has been a great deal of change within acute care settings they are still lacking when it comes to caring for the person with dementia, according to Robinson and Tyndale-Biscoe (2014). Morris et al (2013) argued that the number of people dying with dementia in acute settings needs to be reduced, and McCarron et al (2011) noted that moving people from their home at this stage can be very distressing for the person and family. Wherever the person is cared for the environment should be therapeutic, calm and respectful (Bracegirdle, 2012), comfortable and include activities
78
(Beamer, 2011). Bloomer et al (2012) also raised concerns about the unique social, cognitive and behavioural issues of a person with dementia in a palliative care setting and in sub-acute care, where care is focused on functional rehabilitation. Bracegirdle (2012) suggested that a loss of mental ability can impact on end of life and the environment in which a person with dementia dies. Bloomer et al (2012) argue that there remains a dilemma for where the ideal care should, and can, be provided for people with dementia. Birch and Draper (2008) go on to suggest that the place for end-of-life care should be considered carefully and early in the persons journey. Bloomer et al (2012) also highlight that the introduction of dying pathways can assist with quality of life irrespective of the environment.
Undertreatment Mahon and Sorrell (2008) noted the risk of undertreating people with dementia at the end stage because of the lack of knowledge in relation to the complexity and nuances of the condition. Pain management in particular is considered a major concern (Small, 2007; Chang et al, 2009), which if left untreated could result in delirium (Chung, 2013). However, as Bracegirdle (2012) pointed out, giving analgesia can also increase confusion, sedation and possibly opioid toxicity making the decision harder for the prescribers. Chatterjee (2008) noted that poor cognition ability can result in people with dementia being unable to verbalise their pain, discomfort and emotional anguish. Symptoms can be missed and misunderstood (Bracegirdle, 2012), especially when the person can no longer communicate (Monroe and Hansford, 2010; van der Steen, 2010). At this stage specialist pain-assessment tools that include behavioural cues should be used (Barber and Murphy, 2011; Beamer, 2011). Afzal et al (2010) also found that people in the advanced and end stage of dementia were less likely to be prescribed palliative drugs. They are not always offered medication for symptom control that could alleviate suffering in the same way as that in other patients at end of life (Chung, 2013), and they are assessed for palliative outcomes lower than other patients in relation to anxiety, support and self-worth (Brandt et al, 2005).
Over burdensome treatment Many authors note that during the terminal stage, some people with dementia also continue to receive burdensome aggressive treatment
© 2016 MA Healthcare Ltd
❛People with dementia are less likely to be referred to specialist palliative care.❜
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
(Chung, 2012; Nazarko, 2014). These include artificial or enteral feeding (Chatterjee, 2008; Kapo et al, 2007), arterial blood sampling (Sampson et al, 2008), sedation (Congedo, 2010) and the use of antibiotics (Ryan et al, 2009), as well as resuscitation (Sampson et al, 2008). This, in part, is due to the tension between prolonging life and palliative care at end of life (Torke, 2014) and includes artificial feeding (Barber and Murphy, 2011; Beamer, 2011), especially in ethnic minority groups (Connolly et al 2012), and inappropriate hospitalisation, which may result in inappropriate restraints being used (Beamer, 2011). One of the key challenges is to decrease burdensome treatment and provide a palliativecare approach that focuses on pain and symptom management (Ouldred and Bryant, 2008).
Nutrition and hydration Problems with eating and swallowing are often symptoms of the terminal stage of dementia (Parker and Power, 2013) as well as loss of hunger and thirst drives (Chung, 2013), which can result in ethical and practical dilemmas for health professionals and the patients’ family (Barber and Murphy, 2011). Many authors feel that the use of artificial feeding is not appropriate or beneficial when swallowing problems develop and note that disinclination to eat is a result of the advanced disease (Barber and Murphy, 2011; Parker and Power, 2013) as opposed to a transient phase, which remains an area of contention (Birch and Stokoe, 2010; Congedo et al, 2010). However, Barber and Murphy (2011) remind us of the need for comfort feeding and fluids that should continue to be offered as long as the person shows an interest. Acreman (2009) argued that although nutrition cannot prolong life, it can enable and empower people to optimise physical strength.
© 2016 MA Healthcare Ltd
Ethical decisions Assessing the needs for the person with dementia at the end of life is complex (Sampson et al, 2008) and sometimes decisions are influenced to a greater extent by fears of legal consequences in the case of complications (Birch and Draper, 2008). Therefore, as Gillick (2012) points out, dementia care can raise special ethical issues due to the kind of suffering it engenders with the loss of selfcontrol, capacity for decision making and lack of the appropriate environment for end of life. Many of the ethical decisions in end-of-life care of the person with dementia are also related to the starting of aggressive treatment and stopping of other treatment.
International Journal of Palliative Nursing 2016, Vol 22, No 2
Other areas include the use of antibiotics (Ryan et al, 2009), resuscitation (Sampson et al, 2008) removal of drugs (Parsons et al, 2010) and generally withholding or withdrawing treatment (Parsons et al, 2010), as well as problems with consent and adherence to treatment (Bracegirdle, 2012). These, according to Chang et al (2009), can have conflicting perspectives between law, expectations, policies and the person’s wishes. Although the lack of alignment between the philosophical and clinical perspectives on ethical decision making is challenging Beamer (2011) found that specialist palliative care can promote and assist with ethical decisions.
❛Family and carers should be involved in care to provide better individualised person-centred care.❜
Carer involvement Family and carers should be involved in care to provide better individualised person-centred care (Birch and Draper, 2008). Birch and Stokoe (2010) argue that the carers’ help is crucial, as they are closest to the person and they have a greater understanding of the wishes of the person. This personal knowledge includes reading cues as well as religious, social and cultural expectations that can then inform treatment. This according, to Chung (2013), is especially important around the provision of food and feeding. According to Monroe and Hansford (2010) communication with families about planning for future care and weighing up treatment choices remains very poor, and families often want more information about the condition and the prognosis (van der Steen, 2010; Chung 2013). Denning et al (2013) also suggested that educating carers is essential to improving end-of-life care as they may be making choices that are based on in their own experiences rather than what is best for the person with dementia. Families are often not always aware of the terminal nature of dementia (Sampson et al 2008), and as Chatterjee et al (2008) stated, it is often difficult for relatives to understand the disease trajectory. This lack of understanding can affect how dying people and their families cope with death (Nazarko, 2009b). Therefore when the family’s perception is that a person can die of dementia there is often an increase in the person’s comfort in the dying process (van der Steen et al, 2013).
Collaborative care Birch and Draper (2008) recommend that clinicians and patient groups must work together with specialist services and health commissioners to develop, fund and evaluate cost-effective services that meets the needs of the person with dementia and that of the person’s family.
79
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
Although many people with dementia, according to Small (2007), can fall between the gap between palliative care services and expert dementia care specialists at the end of life, best care should involve a collaboration of these specialists (Bloomer et al, 2012; Beamer, 2011; McCarron et al, 2011). This includes working with the carers (van der Steen, 2010), people and staff who know the person well to deliver the specialist care required (McCarron et al, 2011).
Advance-care planning According to Denning et al (2013), van der Steen et al (2013) and Vandervoort et al (2014) advanced care plans (ACPs) and directives are central to good palliative care, facilitating choice and quality of dying. However, ACPs are often not completed because of the unusual diagnosis (Congedo et al, 2010), lack of GP knowledge about treatment options (de Vleminck et al, 2014) and appropriate time for discussion (Engle et al, 2006). ACPs play a key role in care (Kapo et al, 2007; Parker and Power, 2013) and are reported to lower the levels of emotional distress for families at end of life (Vandervoort et al, 2014), reduce the incidence of emergency admissions to acute care settings and result in better carer bereavement (Sampson et al, 2008). They also provide some autonomy for personal choices once decision-making capabilities are lost (Chatterjee, 2008) as well as help to guide care (Mitchell et al, 2012). Dempsey (2013), and the DH (2013) suggest ACPs need to be carried out early in the disease trajectory; however, Birch and Draper (2008) recommend timely and appropriate communication, including consideration of the place, but Nazarko (2014) argues these should not be left until a crisis point.
Conclusion Bracegirdle (2012) sums up palliative care for the person dying with dementia as a fundamental right to die with dignity and to be safe and protected from harm. Also, as highlighted by Beamer (2011), personhood should be maintained until the end, affirming the values of the person and his or her life. While noting that palliative care is everybody’s right, for the person dying with dementia, several issues have been highlighted through this review. These include the need of recognition that dementia is a terminal illness; that ethical decisions need addressing; that the environment is important and that good palliative care involves collaboration between palliative care services and dementia care experts, as well as
80
collaboration and support of the carer and family member. Conflicts of interest The authors have no conflicts of interest to declare Acreman S (2009) Nutrition in palliative care. Br J Community Nurs 14(10): 427–31 Afzal N, Buhagiar K, Flood J et al (2010) Quality of end-oflife care for dementia patients during acute hospital admission: a retrospective study in Ireland. Gen Hosp Psychiatry 32(2): 141–6 Alzheimer’s Disease International (2015) Dementia statistics. www.alz.co.uk/research/statistics (accessed on 22 January 2016) Anderson WG, Goldstein NE (2012) Update in Hospice and Palliative Care. J Palliat Med 15(2): 236–41 Barber J, Murphy K (2011) Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia. Int J Palliat Nurs 17(12): 567–91 Beamer K (2011) Providing optimal care to patients with dementia. Nurs N Z 17(9): 20–2 Bloomer M, Tan H, O’Connor M et al (2012) Managing terminal dementia. Aust Nurs J 19(9): 36–7 Birch D, Draper J (2008) A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 17(9): 1144–63 Birch D, Stokoe D (2010) Caring for people with end-stage dementia. Nurs Older People 22(2): 31–6 Bracegirdle LR (2012) A tormented death: end-of-life care for people with dementia. Br J Nurs 21(12): 723–7 Brandt HE, Deliens L, van der Steen JT et al (2005) The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale. Palliat Med 19(4): 334–42 Brown MA, Sampson EL, Jones L, Anna M Barron AM (2013) Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med 27(5): 389–400 Chang E, Daly J, Johnson A et al (2009) Challenges for professional care of advanced dementia. Int J Nurs Pract 15(1): 41–7 Chatterjee J (2008) End-of-life care for patients with dementia. Nurs Older People 20(2): 29–34 Chung AM (2012) Percutaneous gastrostomy feeding tubes in end stage dementia: don’t ‘just do it’. Can Assoc Radiol J 63(3 Suppl): S5–6 Chung AM (2013) End-stage dementia and palliative care. BC Med J 55(6): 287–91 Congedo M, Causarano RI, Alberti F et al (2010) Ethical issues in end-of-life treatments for patients with dementia. Eur J Neurology 17(6): 774–9 Connolly AL, Sampson El, Purandare N (2012) End-of-life care for people with dementia from ethnic minority groups: a systematic review. J Am Geriatr Soc 60(2): 351–60 de Leon MJ, Reisberg B (1999) An Atlas of Alzheimer’s Disease (Encyclopaedia of Visual Medicine Series). Parthenon Publishing, Carnforth Dempsey D (2013) Advance care planning for people with dementia: benefits and challenges. Int J Palliat Nurs 19(5): 227–34 Denning KH, Jones L, Sampson EL (2013) Preferences for endof-life care: a nominal group study of people with dementia and their family carers. Palliat Med 27(5): 409–17 Department of Health (2013) Dementia: A state of the nation report on dementia care and support in England. http://tinyurl.com/k6l39nk (accessed 21 January 2016) De Roo ML, van der Steen JT, Garre GF et al (2014) When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings. Palliat Med 28(3): 210–9 De Vleminck A, Pardon K, Beernaert K et al (2014) Barriers to advance care planning in cancer, heart failure and
© 2016 MA Healthcare Ltd
❛Problems with eating and swallowing are often symptoms of the terminal stage of dementia ... ❜
International Journal of Palliative Nursing 2016, Vol 22, No 2
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
Review
dementia patients: a focus group study on general practitioners’ views and experiences. PLoS ONE 9(1): e84905. doi:10.1371/journal.pone.0084905 Engel, SE, Kiely, DK, Mitchell SL (2006) Satisfaction with end-of-life care for nursing home residents with advanced dementia. J Am Geriatr Soc 54(10): 1567–72 Gillick MR (2012) Doing the right thing: a geriatrician’s perspective on medical care for the person with advanced dementia. J Law Med Ethics 51–6 Kapo J, Morrison LJ, Liao S (2007) Palliative care for the older adult. J Palliat Med 10(1):185–209 Kristjanson LJ, Walton J, Toye C (2005) End-of-life challenges in residential aged care facilities: a case for a palliative approach to care. Int J Palliat Nurs 11(3): 127–9 Long CO (2009) Palliative care for advanced dementia approaches that work. J Gerontol Nurs 35(11): 19–24 Mahon MM, Sorrell JM (2008) Palliative care for people with Alzheimer’s disease. Nurs Philos 9(2): 110–20 McCarron M, McCallion P, Fahey-McCarthy E, Connaire K (2011) The role and timing of palliative care in supporting persons with intellectual disability and advanced dementia. J App Res Intellect Disabil 24(3): 189–98 Mitchell SL, Black BS, Ersek M et al (2012) Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med 156(1): 45–51 Monroe B, Hansford P (2010) Challenges in delivering palliative care in the community—a perspective from St Christopher’s Hospice, London, UK. Prog Palliat Care 18(1): 9–13 Morris ZS, Fyfe M, Momen N, Hoare S, Barclay S (2013) Understanding hospital admissions close to the end of life (ACE) study. BMC Health Serv Res. doi: 10.1186/14726963-13-89 Nazarko L (2009a) A time to live and a time to die: palliative care in dementia. Nurs Resid Care 11(8): 399–402 Nazarko L (2009b) Dying trajectories and palliation in a care home setting. Nurs Resid Care 11(12): 613–7 Nazarko L (2014) Quality palliative care for the person with dementia. Br J Healthcare Assistants 8(02): 74–9 National Council for Palliative Care (2015) Dementia. Achieving a good death for people with dementia. www. ncpc.org.uk/dementia (accessed on 22 January 2016) National Institute for Health and Care Excellence (NICE) (2006) Dementia, supporting people with dementia and their carers in health and social care. http://tinyurl.com/ qbu46qu (accessed on 22 January 2016) Office for National Statistics (2013) What are the top causes of death by age and gender? http://tinyurl.com/msz9omp (accessed on 22 January 2016) Ouldred E, Bryant C (2008) Dementia care. Part 3: end-oflife care for people with advanced dementia. Br J Nurs 17( 5): 308–14
Parker M, Power D (2013) Management of swallowing difficulties in people with advanced dementia. Nurs Older People 25(2): 26–31 Parsons C, Hughes CM, Passmore AP, Lapane KL (2010) Withholding, discontinuing and withdrawing medications in dementia patients at the end of life a neglected problem in the disadvantaged dying? Drugs Aging 27(6): 365–499 Robinson P, Tyndale-Biscoe J (2014) What Makes a Top Hospital? Dementia Care. http://tinyurl.com/j5r2tq9 (accessed on 22 January 2016) Ryan T, Ingleton C, Gardiner C et al (2009) Supporting people who have dementia to die with dignity. Nurs Older People 21(5): 18–23 Ryan T, Gardiner C, Bellamy G et al (2012) Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff. Palliat Med 26(7): 879–86 Sampson EL, Thuné-Boyle I, Kukkastenvehmas R et al (2008) Palliative care in advanced dementia: a mixed methods approach for the development of a complex intervention. BMC Palliat Care 7: 8 doi:10.1186/1472684X-7-8 Small N (2007) Living well until you die quality of care and quality of life in palliative and dementia care. Ann NY Acad Sci 1114: 194–203 Thomas K (2010) Using prognostic indicator guidance to plan care for final stages of life. Primary Health Care 20(6): 25–8 Thomas J, Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 8(45): doi: 10.1186/14712288-8-45 Torke AM (2014) Building the evidence base for palliative care and dementia. Palliat Med 28(3): 195–6 van der Steen JT (2010) Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 22(1): 37–55 van der Steen JT, Onwuteaka-Philipsen BD, Knol DK et al (2013) Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study BMC Med 11:105 doi: 10.1186/1741-7015-11105 van der Steen JT, Radbruch L, Hertogh C 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. Palliat Med 28(3): 197–209 Vandervoort A, Houttekier D, Vander Stichele R et al (2014) Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study. PLoS One 9(3): doi:10.1371/journal.pone.0091130
❛Families are often not always aware of the terminal nature of dementia.❜
Book reviews
© 2016 MA Healthcare Ltd
International Journal of Palliative Nursing welcomes suggestions for titles to review that are likely to be of interest to palliative nurses and students. We are also keen to hear from clinicians or educators who would be interested in reviewing books. Guidelines are available. To register an interest please email [email protected] with details of your area of expertise, or write to:
The Editor, International Journal of Palliative Nursing, MA Healthcare Limited, St Jude’s Church, Dulwich Road, Herne Hill, London, SE24 0PB
International Journal of Palliative Nursing 2016, Vol 22, No 2
81
ational Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 137.189.171.235 on March 3, 2016. For personal use only. No other uses without permission. . All rights res
