Evidence Based Material

Management of dementia

North of England evidence based guidelines development project: guideline for the primary care management of dementia
Martin Eccles, Julie Clarke, Moira Livingstone, Nick Freemantle, James Mason for the North of England Evidence Based Dementia Guideline Development Group (BMJ 317, 802-808, 1998)

COPE: towards a comprehensive assessment of caregiver need.
Nolan, M and Philip, I (1999) British Journal of Nursing, Vol. 8, No. 20, pp1364-1373.

Carers (Recognition and Services Act) 1995. Practice Guide.
DoH (1996), London.
This gives family carers who are providing, or intending to provide, a 'substantial amount of care on a regular basis', a statutory right to an assessment of their needs.

Additional text was adapted from Alzheimer's Disease International Factsheet 7, March 1999,
Psychiatric and behavioural disturbances in dementia
Factsheets are available from:
Secretariat Alzheimer's Disease International
45 / 46 Lower Marsh
London
SE1 7RG
United Kingdom
Tel: +44 20 7620 3011
Fax: +44 20 7401 7351
Email: info@alz.co.uk Web: http://www.alz.co.uk/

Disclosure of diagnosis

"The right to know: Sharing the diagnosis of Dementia
Fearnley et al, 1997, published by Alzheimer Scotland - Action on Dementia (ISBN/ISNN 0948897279)
Abstract: The issue of whether people with dementia should be told their diagnosis has become more topical as diagnostic techniques have improved. Increasingly, dementia is diagnosed at an early stage of the illness, when the person with dementia might be considered more likely to understand its implications. This report looks at current discussions on the subject, and seeks to put them in the context of an ethical approach to the care of people with dementia and their families. It asks if there is a 'right' to know, and raises issues for the person with dementia and his or her family, as well as possible conflicts of interest between people with dementia and their carers. It examines good practice in giving a diagnosis, covering: practical issues for people in the early and later stages of dementia; implications for the primary care team; principles and guidelines for good practice when giving the diagnosis; and case studies of good and poor practice.

Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis
Maguire et al (BMJ, 313, 529-530, 1996).

See also: Brotzman and Butler (Journal of Family Practice, 32 (4), 426-7, 1991).

Some evidence regarding current practice comes from a recent postal survey of 261 GPs in Cambridgeshire, where 39% reported that they always or usually disclosed such a diagnosis to patient (Vassilas and Donaldson, 1998).

Consensus guidelines on disclosure of a cancer diagnosis may be helpful;
"How should doctors communicate the diagnosis of cancer to patients?"
Ellis PM, Tattersall MH, Ann Med 1999 Oct;31(5):336-41.
Abstract: The majority of doctors in North America, Australia and much of Europe now inform patients about a cancer diagnosis. However, many doctors report that they have difficulty disclosing a cancer diagnosis. Poor doctor-patient communication skills may lead to psychological distress including increased anxiety and depression and poorer psychological adjustment to cancer. Presenting 'bad' news in an unhurried, honest, balanced and empathic fashion has been shown to produce greater satisfaction with communication of the news. Consensus guidelines have been developed to assist doctors to disclose a cancer diagnosis. Important aspects include exploring the patient's expectations, warning him/her that the news is bad, giving the news at the patient's own pace, allowing time for the patient to react and eliciting the patient's concerns. Doctor-patient communication can be improved by including training courses in communication skills for medical students and clinicians and providing audiotapes of bad news consultations to enhance patient recall of information and increase patient satisfaction with communication. Additional research is needed to investigate effects of strategies to implement guidelines for delivering a cancer diagnosis.

Communication of serious news (in this case, the severity of a child's developmental or physical disability) does not predict parental satisfaction with disclosure. (Sloper and Turner, Developmental Medicine and Child Neurology, 35, 816-825, 1993).