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. 2001 Dec 15;323(7326):1427.

Quality of care for people with dementia

Change in attitude is needed

Joan Scott 1
PMCID: PMC1121871  PMID: 11744573

Editor—Are readers surprised by Ballard et al's findings that nursing homes are failing the needs of patients with dementia?1 Probably not, especially if they spend any time in nursing homes either as a healthcare professional or as a relative or friend.

Ballard et al's conclusion that strategies to improve joint working between the agencies to provide integrated specialist services sounds good, but surely it's the day to day care that's failing people with dementia. Of course they need specialised services, but they need compassion, an understanding of their needs, appropriate activities, and human interaction. These things need time and a special kind of staff who enjoy working with elderly people with challenging problems.

Until relatively recently we were also failing children with severe learning disabilities. Now we understand these children's needs and rights to education, choice, and social interaction. People who work with these children are highly regarded in our society, if not well financially remunerated. It seems to me that until we start to apply the same ethos of care to our elderly people that we apply to our ill and disabled children we will continue to fail them. We must always remember that one day it may be us sitting in that chair with no way of communicating our distress.

References

  • 1.Ballard C, Fossey J, Chithramohan R, Howard R, Burns A, Thompson P, et al. Quality of care in private sector and NHS facilities for people with dementia: cross sectional survey. BMJ. 2001;323:426–427. doi: 10.1136/bmj.323.7310.426. . (25 August.) [DOI] [PMC free article] [PubMed] [Google Scholar]
BMJ. 2001 Dec 15;323(7326):1427.

Dementia care mapping is inadequate tool for research

Chris Edwards 1,2, Chris Fox 1,2

Editor—Ballard et al draw conclusions from observing residents' activities in establishments providing care for people with dementia that few specialist professionals would disagree with: that standards are poor and must be raised.1-1 Their methodology, however, is potentially misleading if service providers use the dementia care index alone as an indicator of improved quality of care.

Dementia care mapping measures the subjective experience of the service user across three dimensions (type of activity, degree of comfort, and time). Standardisation of data is achieved through thorough accredited training, and the dementia care index is derived from aggregation of observations. Typically in our experience, the activity is observed during the working hours of people other than nurses and rarely during early mornings, evenings, and nights.

The paper refers to a standardised six hours of mapping in each home in the study but fails to extrapolate general and relevant data on the quality of the services provided across a 168 hour week. When longitudinal studies have used the dementia care index as a methodological tool it has been to measure the effect of training, empowerment, or other external dynamic factor rather than overall quality of life or care. As experienced managers and clinicians in acute and long stay dementia wards, we would be concerned if the quality of care provided could be generalised from observations in such a period.

Increasing use should not be made of data from dementia care mapping as a comparative indicator of quality of care in units or for individuals. Incorporating a less subjective measure of quality of life to the study design, such as the dementia specific quality of life scale1-2 or a user oriented framework,1-3 would have added to the validity of the authors' findings.

Marshall's editorial highlights several structural and process deficits in places where dementia care is provided.1-4 Externally set standards, expectations, resources, and training are all important in improving care. Each of these factors needs to be incorporated into the scrutiny of care quality for such research to have quantitative conclusions. Dementia care mapping can only presage qualitative discussions within teams.

We would be concerned if care homes began to market their services on the basis of a six hour observed rating, but this may be an outcome of such research methods. Clinicians and service managers need to clarify the minimum standards for care homes for older people.1-5 The tools we use to develop and audit the quality of care must comprehensively reflect the multitude of needs of people with dementia.

References

  • 1-1.Ballard C, Fossey J, Chithramohan R, Howard R, Burns A, Thompson P, et al. Quality of care in private sector and NHS facilities for people with dementia: cross sectional survey. BMJ. 2001;323:426–427. doi: 10.1136/bmj.323.7310.426. . (25 August.) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 1-2.Gonzalez-Salvador T, Lysetkos CG, Baker A, Hovanec L, Roques C, Brandt J, Steele C. Quality of life in dementia patients in long term care. Int J Geriatr Psychiatry. 2000;15:181–189. doi: 10.1002/(sici)1099-1166(200002)15:2<181::aid-gps96>3.0.co;2-i. [DOI] [PubMed] [Google Scholar]
  • 1-3.Dabbs C. What do people with dementia most value in life? J Dementia Care 1999 July/August 16-19.
  • 1-4.Marshall M. The challenge of looking after people with dementia. BMJ. 2001;323:410–411. doi: 10.1136/bmj.323.7310.410. . (25 August.) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 1-5.Department of Health. Care homes for older people. National minimum standards. London: Stationery Office; 2001. [Google Scholar]
BMJ. 2001 Dec 15;323(7326):1427.

Registries charting epidemiological trends and benchmark outcomes are required

Clive Bowman 1, Graham Stokes 1

Editor—We have some reservations about the use of dementia care mapping (used in the paper by Ballard et al) for benchmarking the quality of care of people with dementia.2-1 A fundamental problem is that health and social services have failed to chart the needs for the care of dementia and in consequence service commissioning has been inadequate. Ballard et al's report finds both the health service and the independent sector deficient. It is particularly damning for a health service that has had over 50 years to plan investment in services for people with dementia.

Care homes are the subject of intense policy development and escalating regulation. Commissioning, torn between “best practice” and “value,” is dominated by financial constraints. Marshall, in the accompanying editorial, rightly promotes creatively designed environments for care,2-2 but the necessary finance is not forthcoming.

We have seen a recent phenomenon in referrals for placement in a care home of frail elderly people currently in acute hospital beds. Assessment by care home staff shows these people to have dementia and to be commonly sedated, in an apparent act of containment. A rationale for this seems to be health authority rules that registered mental nurses must supervise residents with dementia in nursing care homes. An irreconcilable shortage of registered mental nurses has led to this regrettable “diagnostic denial.” Assessments seem to say more about the needs of commissioners than the needs of the person needing placement.

Whole systems of integrated care have been proposed.2-3 A recent report from the King's Fund highlighted the poor pay of care workers compared, for example, with supermarket employees.2-4 Combine this with inadequate commissioning of basic and continuing training of care staff and lack of career progression for staff in dementia care and Ballard et al's observations become entirely understandable.

Good dementia care does exist in both the NHS and the independent sector, but usually as a result of enthusiastic champions rather than design. The dementia care literature reports many anecdotes of inadequacy and too infrequent evidence of innovation. Inclusive registries are required that chart epidemiological trends and benchmark outcomes. Such an approach would inform investment as well as regulation for dementia care, putting dementia on an equitable basis with conditions such as heart disease and cancer.

References

  • 2-1.Ballard C, Fossey J, Chithramohan R, Howard R, Burns A, Thompson P, et al. Quality of care in private sector and NHS facilities for people with dementia: cross sectional survey. BMJ. 2001;323:426–427. doi: 10.1136/bmj.323.7310.426. . (25 August.) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2-2.Marshall M. The challenge of looking after people with dementia. BMJ. 2001;323:410–411. doi: 10.1136/bmj.323.7310.410. . (25 August.) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2-3.Royal College of Physicians. The health and care of older people in care homes. A comprehensive interdisciplinary approach. London: RCP; 2000. [Google Scholar]
  • 2-4.Henwood M. Future imperfect. Report of the King's Fund care and support worker inquiry. London: King's Fund; 2001. [Google Scholar]

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