Understanding the psychological needs of care-partners of people with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare, atypical Parkinsonian syndromes. PSP and CBD share many of the same physical symptoms of Parkinson's disease (e.g. muscle stiffness, loss of balance, difficulty walking etc.). However, people with PSP and CBD also experience distinct symptoms to Parkinson's disease such as falling backwards, changes to/loss of speech, changes to behaviour (e.g. disinhibited, controlling or compulsive behaviour, loss of empathy), and cognitive changes (e.g. memory problems, problems planning/organising/multi-tasking). Typically, PSP and CBD progression is faster than Parkinson's disease.
Care-partners (unpaid family members/carers) of people with PSP/CBD play a hugely significant role in offering emotional, psychological and physical support to their loved ones with PSP and CBD. It is likely that without the care-partners’ support, the quality of life of people with PSP or CBD would be directly impacted. Prioritising the psychological needs of care-partners is vitally important to help improve the quality of life for people living with the condition, as well as for the care-partners themselves.
CEDAR conducted and analysed qualitative interviews with 13 care-partners of people with PSP and CBD to better understand their emotional and psychological needs, to better understand how to support care-partners going forward. Care-partners were asked questions about how the diagnosis and day-to-day care involved looking after people with PSP and CBD affects them psychologically and emotionally. They were also asked what support would be most helpful, in supporting their emotional and psychological wellbeing. CEDAR are currently analysing the interviews.
Chief Investigator: Dr Ruth Lewis-Morton
CEDAR Lead: Dr Grace McCutchan