Elsevier

The Lancet Neurology

Volume 7, Issue 4, April 2008, Pages 362-367
The Lancet Neurology

Review
Person-centred care of people with severe Alzheimer's disease: current status and ways forward

https://doi.org/10.1016/S1474-4422(08)70063-2Get rights and content

Summary

When caring for people with severe Alzheimer's disease (AD), the concept of the person being central is increasingly advocated in clinical practice and academia as an approach to deliver high-quality care. The aim of person-centred care, which emanates from phenomological perspectives on AD, is to acknowledge the personhood of people with AD in all aspects of their care. It generally includes the recognition that the personality of the person with AD is increasingly concealed rather than lost; personalisation of the person's care and their environment; offering shared decision-making; interpretation of behaviour from the viewpoint of the person; and prioritising the relationship as much as the care tasks. However, questions remain about how to provide, measure, and explore clinical outcomes of person-centred care. In this Review, we summarise the current knowledge about person-centred care for people with severe AD and highlight the areas in need of further research.

Introduction

Owing to the expected increase in the prevalence of Alzheimer's Disease (AD), best-practice models that promote a good life for people with AD need to be developed and assessed. AD progressively inhibits the abilities to communicate and satisfy basic human needs. The care of people with severe AD largely involves compensating for their diminishing ability to fulfil basic needs by providing assistance in areas such as activities of daily living, mobility, safety and function, toileting, mouth care, and grooming. The prevention, management, or elimination of discomfort such as pain, constipation, skin deterioration, malnutrition, physical exhaustion, and adverse pharmacokinetic and pharmacodynamic reactions are also areas that are central to the provision of basic physical care for the person with AD.1, 2 The basic human needs of a person with severe AD also include psychosocial aspects, such as feeling safe, having a sense of belonging and acceptance, maintaining social contacts, feeling respected, and experiencing a sense of contribution.3 As the person with AD becomes progressively unable to satisfy their psychosocial needs, good care should also include attending to these and eliminating discomfort in this arena as much as for their basic physical needs.4 However, satisfaction of the physical needs can come at the expense of the psychosocial needs of the person if the care is too focused on the body or care tasks, and the risk is that the care becomes task oriented, objectifying, and depersonalising if psychosocial needs are not considered.5, 6 Person-centred care is a widely used concept for holistic and individual-centred best-practice care of people with dementia.7 This article reviews the current knowledge about person-centred care for people with severe AD and highlights areas that need further research.

Section snippets

Views of people with severe AD

The concept of personhood—ie, the quality or condition of being a person—for people with AD has been debated. Some investigators suggest that the cognitive decline of the disease process gradually erodes personhood down to nothing,8 whereas other researchers argue that personhood is increasingly changed and hidden, but not lost.7, 9, 10 However, from a symbolic interactionist perspective, the self is considered as a social construction through interactions with others,11, 12, 13 and the social

Content and meaning of person-centred care

The concept of person-centred care has been increasingly advocated during the past decade as a means to provide a subjective lived-experience perspective of AD. Kitwood9 is generally described as the founder of the concept of person-centred dementia care, which was developed in response to what was labelled as a reductionist biomedical view of dementia that downgrades the person to a carrier of an incurable disease and thereby ignores personal experiences of well-being, dignity, and worth.9

Delivery and outcomes of person-centred care

Several behaviours associated with AD can be interpreted from a biomedical perspective as symptoms of anatomical and neurochemical damage to the brain.35 However, from a person-centred, needs-driven, dementia-compromised perspective such behaviours are interpreted as ways to communicate unmet basic needs, such as hunger, thirst, or pain, and reactions to a non-adapted environment, such as sensory overload.36, 37, 38, 39 Care strategies to alleviate various behaviours can differ depending on

Research limitations and conclusions

The published work on person-centred care for people with severe AD comprises a large number of articles that are based on clinical experiences, personal opinions, and anecdotal evidence; however, there are few theoretically and empirically rigorous studies.7, 22, 28, 65, 83 The clinical effects of person-centred care as established by interventions and outcome studies are also, to some extent, still lacking.19, 20, 23, 24, 25, 33, 44 The methodological limitations of published studies that

Further research

More research is required about person-centred care, and the results of published studies point towards areas in need of further study. Appropriate, valid, and reliable measurement tools need to be developed, whereby the prerequisites, facilitators, barriers, and elements of person-centred care in different settings can be investigated. New interventions need to be developed, and previous studies that used person-centred interventions need to be repeated. The effect of different organisational

Search strategy and selection criteria

References for this Review were identified by searches of PubMed (1966 onwards), Cinahl (1982 onwards), and the Cochrane Library Issue 4, until October, 2007, with the terms “person-centred” and “patient-centred” (US and UK spellings), “Alzheimer's disease”, “nursing”, and “care”. Articles were also identified from relevant articles and the authors' files. Only articles published in English and articles that described person-centred care for people with Alzheimer's disease or related

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