A qualitative study exploring the specific everyday social and environmental challenges faced by community dwelling people living with posterior cortical atrophy (PCA)

Posterior Cortical Atrophy (PCA) is a rare progressive degenerative neurological condition where individuals experience serious vision and perception difficulties. In most cases, the underlying cause for these problems is Alzheimer’s disease. Unlike typical Alzheimer’s, the damage to brain cells is particularly focused at the back of the brain and in the early stages of the condition, day to day memory remains intact. Diagnosis of PCA is often protracted and to date, the specific needs of such individuals have tended to be overlooked. The aim of the study is to contribute to the knowledge base around visual impairment caused by PCA. This study recognised the need for more qualitative inquiry into the specific challenges faced by individuals with this condition. Understanding effective types of improvements to a person’s social and physical environment may improve the wellbeing of community dwelling people experiencing this debilitating condition. To explore practical ‘real-life’ problems and issues, a qualitative research study using in-depth interviews with four community dwelling individuals living with PCA and their caregivers is undertaken. A person-centred philosophy is emphasised to enable the voices of these individuals to be heard. Phenomenological analysis is used to gain a better understanding of the subjective experiences of living with PCA and/or caring for somebody with this condition. The key message from participants is poor understanding of PCA by health and social professionals as well as the general public, inhibiting the provision of information and support for the people with PCA and their caregivers. Finally, the results of this investigation have been used to generate the basic tenets of a best practice guide for supporting people living with PCA and their caregivers. Keywords: posterior cortical atrophy; dementia; Alzheimer’s disease; vision loss; perception; physical environments; case study design; qualitative research; care model