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
ReviewPerson-centred care of people with severe Alzheimer's disease: current status and ways forward
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 (85)
Dementia: sociological and philosophical constructions
Soc Sci Med
(2004)- et al.
Patient-centredness: a conceptual framework and review of the empirical literature
Soc Sci Med
(2000) Dilemmas in patient centeredness and shared decision making: a case for vulnerability
Patient Educ Couns
(2006)- et al.
Care of individuals with Alzheimer's disease in the new millennium
Medsurg Nurs
(2004) Nursing management of the patient with Alzheimer's disease
Br J Nurs
(2006)Motivation and personality
(1954)Interaction with people suffering severe dementia
- et al.
Reframing person-centred nursing care for persons with dementia
Res Theor Nurs Pract
(2007) - et al.
Seeing the person behind the patient: enhancing the care of older people using a biographical approach
J Clin Nurs
(2003) Person-centredness in gerontological nursing: an overview of the literature
Int J Older People Nurs
(2004)
Dementia reconsidered: the person comes first
Embodied selfhood in Alzheimer's disease. Rethinking person-centred care
Dementia
Symbolic interactionism: perspective and method
Mind, self, and society
The presentation of self in everyday life
Expressions of personhood in Alzheimer's disease: an evaluation of a research-based theatre as a pedagogical tool
Qual Health Res
Confirmation and lucidity during conversations with a woman with severe dementia
J Adv Nurs
Lucidity in a woman with severe dementia related to conversation. A case study
J Clin Nurs
Demenssjukdomar. En systematisk litteraturöversikt. Rapport 172, 2006
The ethical demand
Concerns relating to the application of frameworks to promote person-centredness in nursing with older people
J Clin Nurs
Person-centredness: a concept analysis
Contemp Nurse
Person-centred care for people with severe dementia
Interventions for providers to promote a patient-centred approach in clinical consultations
Cochrane Database Syst Rev
How patient-centred am I? A new method to measure physicians' patient-centredness
Patient Educ Couns
Person-centredness in gerontological nursing: an overview of the literature
Int J Older People Nurs
Skilled companionship in professional practice
Beyond ‘person-centred’ care: a new vision for gerontological nursing
J Clin Nurs
Turning rhetoric into reality: person-centred approaches for community mental health nursing
Stigma: notes on the management of spoiled identity
What constitutes good care for people with dementia?
Br J Nurs
Dementia care mapping: a review of the research literature
Gerontologist
Development of a framework for person-centred nursing
J Adv Nurs
Person-centred dementia care: making services better
Aggressive, socially disruptive and antisocial behaviour associated with frontotemporal dementia
Br J Psychiatry
Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and ‘behavioural disturbances’ and on her care providers
J Adv Nurs
The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted—to a residential home
J Clin Nurs
Experiences of at-homeness and homesickness in patients with Alzheimer's disease
Am J Alzheimers Dis Other Demen
Need-driven dementia-compromised behavior: An alternative view of disruptive behavior
Am J Alzheimers Dis Other Demen
BPSD from a nordic perspective. Behavioural and psychological symptoms in dementia. A state-of-the-art document
Progressively lowered stress threshold model: understanding behavioral symptoms of dementia
J Am Geriatr Soc
Progressively lowered stress threshold: a conceptual model for care of adults with Alzheimer's disease
Arch Psychiatric Nurse
Cited by (458)
The nurse, recurrent cries
2023, Soins Gerontologie