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

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.