Abstract

There are 46.8 million people living with dementia in the world, and this number is expected to rise. 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 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.