The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

Abstract

Aim: This qualitative study was undertaken to explore the lived experience of people newly diagnosed with dementia at one local post-diagnostic counselling service in Scotland.

Methods: A interpretative phenomenological approach was adopted, data was collected by means of one-to one interviews with people newly diagnosed with dementia.The process of ethical approval was lengthy and conditions attached to recruitment. Of 9 possible participants, 3 women were recruited. Due to the small number, results were presented as individual narratives.

Results: The 3 women all reported a long wait for the service following diagnosis and they were unclear as to the purpose of the service. All reported a reluctance to attend the counselling service.Two women had family support and found talking to the nurse counseellor very helpful.One woman had no such support and perceived the service to be a covert form of further assessment.

Conclusions: Although positive steps have been taken towards improving the service, the uptake was poor. One of three participants perceived this service to be another form of assessment, which shows the heightened anxiety of people newly diagnosed with dementia. This is especially so for people with no supportive friends and/or family.

Recommendations: From this small study it appears that post diagnostic counselling needs to be offered at time of diagnosis. It also appears that careful attention should be given to all forms of communication with people newly diagnosed with dementia, as they are at a vulnerable time in their lives and are frightened by service interventions.