Skip to main content

Research Repository

Advanced Search

Examining Dementia Caregivers’ Experiences

Joy, Jane; Whitelaw, Tommy; Oldfather, Irene; Willis, Diane


Jane Joy

Tommy Whitelaw

Irene Oldfather


There are 46.8 million people living with dementia in the world and this number is expected to rise (The World Alzheimer Report 2015). The burden on caregivers can be enormous, yet in the UK they save the NHS and Social care services millions of pounds every year. This paper explores the experiences of informal caregivers when caring for someone with dementia. Some 417 letters and blogs were sent over a four-year period to Tommy Whitelaw, a carer/campaigner on dementia care. He, himself an informal caregiver, had looked after his mother who had dementia over five years and had found the experience challenging. This had encouraged him to speak to health care professionals and government ministers on the difficulties when caring for loved ones who have dementia. He then asked caregivers to write to him describing their own experiences. This correspondence was analysed thematically. The key themes identified within it were: Casualty of caring, Frustration, Economics of caring, and Patchwork care. It is hoped that these findings will help future practitioners understand the nature of caring for someone at home and that they can be used in the undergraduate curriculum for students in their preparation for practice.


Joy, J., Whitelaw, T., Oldfather, I., & Willis, D. (2016). Examining Dementia Caregivers’ Experiences. International Journal of Aging and Society, 7(2), 59-72.

Journal Article Type Article
Acceptance Date Mar 24, 2016
Publication Date 2016
Deposit Date Oct 19, 2016
Journal International Journal of Aging and Society
Print ISSN 2160-1909
Electronic ISSN 2160-1917
Publisher Common Ground Research Networks
Peer Reviewed Peer Reviewed
Volume 7
Issue 2
Pages 59-72
Keywords Dementia, Alzheimers, carers,
Public URL