Quality of life and living positively with primary progressive aphasia

Measuring quality of life is important for healthcare, in clinical, policy and research contexts. Very little previous work had investigated quality of life in Primary Progressive Aphasia (PPA), a language-led dementia associated with declines in communication skills over time. This thesis therefore explored what people with PPA reported about their quality of life and their lived experiences of living positively with PPA. It also investigated whether qualitative and quantitative methods of inquiry, as well as the views of people with PPA themselves versus their friends and family, yielded different information about quality of life in this population. 

During interviews, people with PPA reported difficulty and frustration living with PPA, beyond the impact of linguistic impairments. They described that they were often still able to find ways to adopt a positive outlook, although there was a limit to their positivity. People with PPA had heterogeneous presentations when using scales to rate their quality of life. In the small sample presented in this thesis, better quality of life was related to fewer symptoms of depression, less time since the onset of PPA symptoms, greater ability to engage in functional and enjoyable activities, and being female, although not severity of language impairments. Most individuals were able to use quality of life scales, although in the case of those who couldn’t, they could still read the questions and provide clinically informative information about themselves and what was important to them. Asking family and friends to rate on their behalf, however, did not appear to be an interchangeable method of assessment, with some family and friends rating quality of life lower than the individual with PPA rated themselves, and others higher. 

Although the findings from these studies would benefit from replication, there are useful clinical implications. Quality of life scales designed for stroke-aphasia and dementia appear to be useful for the PPA population and can provide clinically relevant information on areas of difficulty, values and potential intervention goals. Speech pathologists are well placed to facilitate communication when asking individuals with PPA about their lived experiences or assisting them to rate their quality of life using scales. The results reported here also support the provision of multidisciplinary services for people with PPA and their social networks which include: assistance to adapt and maintain hobbies and interests over time, psychosocial interventions, and education for friends and families about the nature of PPA and how best to support communication.