Living Well until You Die : Quality of Care and Quality of Life in Palliative and Dementia Care

Living Well until You Die

Quality of Care and Quality of Life in Palliativeand Dementia Care

NEIL SMALL

School of Health Studies, University of Bradford, Bradford, United Kingdom

ABSTRACT: The incidence and prevalence of dementia across the world isincreasing, carrying crucial implications for the discourse about healthyaging and longevity. For such a discourse to progress, it must engage withthe challenge of dementia. If we live into our 80s, then every fifth one ofus will have dementia. Of the four who do not, another one is likely tobe sharing their life with someone who does. Existing care regimes havefailed to consistently act upon best practice in dementia care. That bestpractice can be pursued via mutual learning between palliative care andperson-centered dementia care. Even with cognitive disability and life-limiting illness, it is possible to live well, and it should be an imperativethat people be supported to have a better quality of life than they donow. Implementing evidence-based best practice is not enough—it is alsonecessary to engage with social attitudes toward dementia. Otherwisethere is the danger that a significant proportion of older people will bemarginalized from a newly emerging ontology of old age.

KEYWORDS: palliative care; dementia; quality of life

THE IRONY OF LONGEVITY

The increasing prevalence of dementia creates challenges for societies, forhealth and social care professionals, and for individuals and families. It alsocreates challenges for the development of a discourse of healthy aging. Anunderstanding of healthy aging encompasses a commitment to enhance thequality of a person’s life as he or she ages. If we ask, “What can we do tomaximize quality of life for a person with dementia?” two areas of challengeare revealed. The first exists at the level of social attitudes, whereas the secondis evident in professional practice. Both cognitive impairment and terminal

Address for correspondence: Neil Small, B.Sc. (Econ.), M.S.W., Ph.D., Professor of Health Research,School of Health Studies, University of Bradford, 25 Trinity Road, Bradford BD5 0BB, UK. Voice:+44 (0)1274236456; fax: +44 (0)1274 236458.

[email protected]/acad/health/research/pcg

Ann. N.Y. Acad. Sci. 1114: 194–203 (2007). C© 2007 New York Academy of Sciences.doi: 10.1196/annals.1396.019

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illness have resulted in social exclusion. A characteristic response to the formerhas been to assume that a loss of self has occured.1 Responses to the latter haveincluded the sequestration of the dying person to a liminal world of the “not yetdead.”2 When both cognitive impairment and terminal illness co-exist, thereare powerful barriers to considering that person’s health and social well-beingas a priority. If there are barriers to encouraging healthy aging for peoplewith dementia that are consequent on prevailing social attitudes, there are alsobarriers to physical and mental well-being because of the prevalence of badpractice and the paucity of care based on evidence of best practice. This paperaddresses each of these areas of challenge and argues that much can be doneto help people with dementia live well until they die. This can be achieved, inlarge part, through promoting a hybrid construction combining palliative careand person-centered dementia care.

THE EPIDEMIOLOGY OF DEMENTIA

Dementia is poised to become the dread disease of the developed world inthe 21st century. Different eras throw up a disease that is particularly dreaded.That disease serves as the nemesis to the shape taken by the perennial hubristicassumption that man is in control of the world we live in, that we are as gods.3

Hubris appears to be always present, even if its characteristic features change.When we thought we could shape the world via industrialization and urbaniza-tion, our dread disease was one of proximity, tuberculosis. When we presumedthat reason, and its standard-bearer science, would solve all problems, our dreaddisease was cancer, one of blind, meaningless replication. Now the times arecharacterized by individuals defining their own truth, believing that we are whowe are because of our capacity to choose and to reason. Consequently, loss of in-tellectual capacity characterizes our current dread disease—dementia.4 Dreadengenders fear and awe, reactions that stop you in your tracks or make you runaway—not reactions that prompt close or creative engagement.

But dread diseases are dread because they are both ontologically and epi-demiologically challenging. Worldwide 24 million people now live with de-mentia and this number is forecast to rise to 81 million by 2040. Between 2001and 2040 numbers in developed countries are expected to rise by 100%, whilethose in India, China, South Asia, and the western Pacific are forecast to riseby 300%.5 Central to the explanation of this increase is an overall increase inlife expectancy, more evident in some countries, but also a world trend. Figuresfrom the United Kingdom underline the connection between increased age andnumbers with dementia. The prevalence rate increases from 1 in 1000 for 40-to 65-year-olds to 1 in 5 for people over 80 years old.6 Dementia presents ina number of ways—each has different patterns of onset and differing impactson functioning. Alzheimer’s disease and vascular dementia are the two mostoften observed, accounting for approximately 55% and 20% of all dementias,respectively.

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TABLE 1. Changing epidemiology of dementia in the United States, United Kingdom, andAustralia

United States: Estimates from the year 2000 were that 4.5 million people were living withAlzheimer’s dementia. This figure represents a doubling of the recorded incidence since1980.29 It is predicted that by 2050 this figure will rise to between 11.3 and 16 million.Approximately 1.1 million of these people live with moderate to severe dementia and itis estimated that by 2015 this will rise to 2.8 million.

United Kingdom: Dementia affects 750,000 people.6 Eighteen thousand people affectedby dementia are less than 65 years old. The estimates are that by 2010 there will be870,000 people with dementia.

Australia: Population estimates published in 1998 identified 134,000 people withdementia. In the population aged 65–84 years, 5% of people were affected, and forpeople over 85 years, this rose to 25%.30 By 2002 overall numbers had risen to162,000.31 It is projected by 2040 there will be 500,000 people with dementia and bythen dementia is expected to be the primary cause of major chronic illness in Australia.

While there is a strong trend evident worldwide, there is some variation inincidence and prevalence figures within countries. Dementia is a syndrome,variously diagnosed, and mediated by social norms. Certain presentations arenow more likely to be named as dementia. In the past, similar characteristicsmay have been identified using a different term, senility, for example, or anexplanation from a different epistemology may have been sought,7,8 for exam-ple, from that of mysticism or spirituality. TABLE 1 provides more detail on thechanging epidemiology of dementia in the United States, the United Kingdom,and Australia.

People die with dementia in one of three ways9: They reach the end of theirlife with dementia, but die from another condition. Others with dementia reachthe end of their life with a complex mix of dementia and other medical con-ditions which together lead to their death. Finally, some people live until theirdementia is very advanced and die from the complications that this brings.10

QUALITY OF CARE FOR PEOPLE WITH DEMENTIA

Patterns of care for people with dementia vary within and between countries,but they are most often characterized by complex combinations of health andsocial care, sometimes domiciliary and sometimes institutional. Considerableproportions of care are provided by family and lay caregivers. Consequently,growing numbers of the elderly, including the very elderly, rely on other elderlypersons for care.

In this section I will concentrate on care at the end of life and will argue thatthere are widespread inadequacies in this care. These can be summarized asarising from too much intervention or too little.

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Too Much

There has been a widespread identification of the imposition of unnecessaryinterventionist regimes during hospitalizations including tube feeding, labo-ratory tests, the use of restraints, and intravenous medications. The result isnot good-quality care, and there is evidence of pressure ulcers, constipation,shortness of breath, and pain in such patients. One study found that 51% ofpatients with advanced dementia received a new feeding tube during a terminalhospitalization compared with 11% of patients with metastatic cancer. Thereis no evidence base for the efficacy of tube-feeding in this population.11

Too Little

While it is evident that there can be interventions that are unnecessary andnot evidence-based, there is also a story of too little care, as evidenced in:

(1) poor pain control;(2) dehydration and malnutrition;(3) emotional and social neglect;(4) absence of spiritual care; and(5) lack of support for family caregivers.4

If people with dementia are to live as well as they can until they die thenthe sorts of failings of care regimes identified above have to be addressed.This requires not only that what is known about best practice be implemented,but also that more fundamental problems about perceptions of people withdementia and the pessimistic assessments of the possibilities for improvingtheir lives have to be engaged with. In the next section I will introduce twoways of approaching care that have the potential to change assumptions andapproaches to care.

PALLIATIVE CARE AND PERSON-CENTERED CARE

The modern hospice movement and specialist palliative care developed firstin the United Kingdom and then spread across the world in the late 1960s and1970s and at an increased speed in the 1980s.12 Hospice and specialist palliativecare are now present in more than a hundred countries, with some countriesseeing very large numbers of initiatives falling within the parameters of thistreatment approach. (For example, in the United Kingdom in 2003–2004 therewere 58,000 admissions a year to palliative care units: in the United States thereare 3139 hospice and palliative care services and there are 280 in Australia.13)

TABLE 2 offers a summary of the key constituents of a palliative care ap-proach. It also summarizes person-centered dementia care, which I shall con-sider below.


TABLE 2. Definition and characterization of palliative and person-centered care

Palliative care Person-centered care

Palliative care is an approach that improvesthe quality of life of patients and theirfamilies facing the problems associatedwith life-threatening illness, through theprevention and relief of suffering bymeans of early identification andimpeccable assessment and treatment ofpain and other problems—physical,psychosocial, and spiritual.

Person-centered care is an approach tocaring for people with dementia thataffirms continuing “personhood” and that,in so doing, challenges a previouslyprevalent “malignant social psychology.”

Palliative care: Person-centered care:• Provides relief from pain and other

distressing symptoms• Affirms the value of a person and his or

her life regardless of disability• Affirms life and regards dying as a normal

process• Recognizes that people actively cope

with dementia• Intends neither to hasten nor postpone

death• Seeks to minimize the impact of

cognitive, functional, and behavioraldeficits on a person’s quality of life

• Integrates the psychological and spiritualaspects of patient care

• Addresses physical, emotional, spiritual,and social aspects of the person’s life

• Offers a support system to help patientslive as actively as possible until death

• Recognizes the role of life history andpersonality

• Offers a support system to help the familycope during the patient’s illness and intheir own bereavement

• Insists that each person be treated as anindividual

• Uses a team approach to address the needsof patients and their families, includingbereavement counseling if indicated

• Recognizes that family and staff play akey role in maintaining personhood andquality of life

• Will enhance quality of life, and may alsopositively influence the course of illness

• Recognizes that family and care staffneed support.33

• Is applicable early in the course of illness,in conjunction with other therapies thatare intended to prolong life, such aschemotherapy or radiation therapy, andincludes those investigations needed tounderstand better and manage distressingclinical complications.32

When people are dying with dementia there is a gap they can fall into:Traditional geriatric care, care of the elderly, and old-age psychiatry, despitemaking considerable advances in some areas, have not always given optimalrelief in dementia. Palliative care units have often not known how to respondto cognitive and behavioral problems.14,15 Palliative care has had difficultieswhen prognosis is uncertain and when dying is potentially protracted.16 Spe-cialist palliative care teams and hospices are underused by older people andby people with non–cancer diagnoses, including dementia.17 Indeed the ma-jority of palliative care teams in the United Kingdom, even by the mid 1990s,did not include dementia as falling within their remit.18 In the United States,

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admission of people with dementia into hospice programs has been promotedsince the early 1980s.19

Person-centered dementia care emerged in the 1980s and 1990s. Its an-tecedents were similar to those of palliative care, namely a critical stance tocurrent care regimes and a belief that if the challenge of the condition couldbe reframed, then therapeutic opportunities would be revealed. Specifically,Kitwood argued that dementia could be understood as evidencing a dialecticalinterplay between neurobiology and the social environment.20 Care regimescould be modified such that they did not just undertake custodial containment,but could be used to improve well-being. For example, it became possible toidentify behaviors that, if understood as attempts at communication rather thanas symptomatic of neuropsychiatric disease, could be responded to in ways thatwould meet emotional or social needs.21,22 By 2004 it was possible to recordthe wide international impact of this approach23 and to identify considerableresearch support for its efficacy.24

Similar trends are evident in hospice and palliative care and in person-centered dementia care. These are summarized in TABLE 3.

LEARNING FROM EACH OTHER—COMBININGAPPROACHES

In this article I have argued that we have to address both social attitudes andpractical failures if we are to act in a way that improves the quality of life ofpeople with dementia. Practically, we now have more treatment possibilities.These have come from a growing knowledge of brain function, includingan ability to focus intervention on the least-affected areas of the brain andfrom an ability to enhance memory and perception.25 Successful interventionshave been developed to improve cognition and enhance functioning in thepresent.26,27 The most commonly identified causes of death for people withdementia include pneumonia, cardiovascular events, pulmonary embolism, anddysphagia.10 There is also a high incidence of falls, the consequence of whichcan precipitate decline and death.28 All of these causes of death or physicaldecline can be managed in a way that ameliorates their impact. Palliativecare regimes that plan for the totality of the person’s needs are the best wayto achieve this. There is much therefore to counter therapeutic pessimism. Allthese advances, both attitudinal and practice-based, can be furthered by a closerliaison between palliative care and dementia care. What each approach has tooffer the other is summarized in TABLE 4.

CONCLUSIONS

This article began by suggesting that both the existence of dementia andits prevalence pose a challenge for the advancement of healthy aging. It has


TABLE 3. Some similarities between palliative care and person-centered dementia care

Aspects of the Palliative Person-centeredapproach care dementia care

V’s Cartesian dualism Better understanding of painas beingmulti-faceted—physical,emotional, social, andspiritual pain

Better understanding of thebrain and the way that theenvironment interacts inways that can be eitherpositive or negative

Critical of existing services Poor quality: the dyingexperienced abandonment,in particular by the medicalprofession.

Poor quality, a prevalenttherapeutic nihilism, or alack of a clear senseabout what is best to do.The result is that too littlehelp or too muchinappropriate help wasprovided

Knowledge comes from thepatient

People became subjects intheir own dying—that is,care was shaped to meettheir particular needs.

Listening to what the personis saying or discerningwhat their actions aretelling us; developingapproaches to facilitatethis

Context of the whole life Caregiver’s burden andbereavement care becomelegitimate foci forpalliative care services.

Caregivers and professionalstaff need to be supportedas well as the person withdementia. This personwith dementia retains aself even if that selfappears to changebetween the person whowas, is, and will be.

been argued that there is much we can do to help people with dementia livewell until they die. To achieve this we have to implement best practice interms of quality of care. This requires changes in service organizations andin the training, attitudes, and practice of health and social care professionals.Such changes would be better facilitated if modes of care could embrace theexperiences of modern palliative care which, at the level of social attitudes andself-perceptions as well as at the level of evidence-based care provision, hasshown that it is possible to enhance living until you die.

A concern with healthy aging is a social construct that can be misused inthat it is vulnerable to a juxtaposition of descriptive and normative meanings.Here the shift would be captured by putting together “healthy” and “success-ful” aging. To successfully age invokes an ethos of achievement. To constructfor oneself a healthy aging may be a valuable counterweight to deficit modelsof aging, the assumption that aging is a period of decline, but it risks disen-franchising those for whom autonomy and self-aware agency have ceased to

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TABLE 4. Learning from each other

What palliative care could What dementia care couldoffer people with dementia offer palliative care

Inhibition of unnecessary interventions Expertise across many diseasesUse of techniques to improve care Ability to respond to multiple pathologiesInclusion of more consultation with

patients and caregiversDevelopment of programs for long-term

engagement with patientAdaptation of bereavement care for the

particular circumstances of dementiaEngagement of patients who have no verbal

abilitiesWork with cognitive and behavioral problems

be a key feature of their lives. If we see healthy aging as achievement, as amanifestation of a modernist imperative to “make oneself,” then we risk creat-ing another barrier separating the person with dementia from the society theylive within.

The challenge of promoting health aging is one of how to expand the spanof healthy living to the end of the life span, whenever that is. To includepeople with dementia we need to develop an epistemology that incorporatesevidence-based practice within a person-centered care paradigm. To redressthe dangers of social isolation and either therapeutic neglect or nihilism, weneed to question what our dread of dementia might indicate about the way wesee ourselves and the way we conceptualize the society we live within.34

ACKNOWLEDGMENTS

Much of my thinking about dementia and palliative care has evolved fromworking with Professor Murna Downs (University of Bradford) and Dr. Kather-ine Froggatt (Lancaster University).

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Living Well until You Die : Quality of Care and Quality of Life in Palliative and Dementia Care

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