International Psychogeriatrics

Review Article

Suffering from dementia – the patient's perspective: a review of the literature

Marike E. de Boera1 c1, Cees M. P. M. Hertogha1, Rose-Marie Dröesa2, Ingrid I. Riphagena3, Cees Jonkera2 and Jan A. Eefstinga1

a1 Department of Nursing Home Medicine, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, The Netherlands

a2 Department of Psychiatry/Alzheimer Centre, VU University Medical Centre, Amsterdam, The Netherlands

a3 Medical Library, VU University Library, VU University Amsterdam, The Netherlands

ABSTRACT

Background: Among the general public there is a deep fear of developing dementia, which has led to an increasing number of people “at risk” seeking ways (such as advance directives) to avoid undergoing progressive mental decline. The views of people with dementia are vital in obtaining a real answer to the question of how the disease affects people's lives and whether it actually involves the suffering that so many fear.

Method: A review of the international literature is provided on what is known about living through dementia from the patient's perspective.

Results: A total of 50 papers met the inclusion criteria. The findings of these reviewed papers give insight into the impact of dementia and the ways that those who have it deal with its effects by using different coping strategies. The literature on the perspective of the patient gives no solid support to the widespread assumption that dementia is necessarily a state of dreadful suffering. Although the impact of dementia and the experiences of loss resulting in multiple “negative” emotions cannot be denied, our findings also indicate that people do not undergo the disease passively and use both emotion-oriented and problem-oriented coping strategies to deal with its challenges. The experiences of living through dementia as told by the sufferers appear to yield a more subtle picture than the assumptions made by the general public.

Conclusion: The overview provides a good starting point for improving the adjustment of care to the experience and wishes of people with dementia.

(Received December 20 2006)

(Online publication January 31 2007)

(Revised April 02 2007)

(Accepted April 05 2007)

(Online publication August 30 2007)

Correspondence:

c1 Correspondence should be addressed to: Marike E. de Boer, Department of Nursing Home Medicine, Institute for Research in Extramural Medicine, VU University Medical Centre, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. Phone: +31 204 449 686; Fax: +31 204 448234. Email: m.deboer@vumc.nl.

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