Key points from the interview:
- Dementia has an ongoing stigma, which also applies to palliative care, particularly in minority heritages. He is currently working on a book about negotiating experiences and living for each day, to achieve something within the days his friend (and co-author) still has.
- Getting the most from each day – we need to talk to people about their likes in the scope of what they can do – this could be poetry, music, food, friends, gardening etc. Palliative care should lift restrictions, treat the person as a person, not just a patient and not encourage people to live in fear of a terminal illness.
- The challenge for dementia services is that each person is different – there are different levels of complexity and severity, which carry different risks and different possibilities
- Those working in the service need to be trained to identify and understand difference. We need to identify and work at good practice and believe that services can change and adapt (as they did during COVID)
- The starting point within the assessment process is a conversation that responds to peoples personal needs and preferences and builds people’s aspirations for their quality of life. Clinical needs assessment conversations never get to the heart of things. This conversation should also include their family / loved ones.
- Trust can be major barrier to these conversations – they are awkward conversations and people within mainstream services have little experience or training to help them
- One of the things that people from minority communities can constantly raise is the fact that there they feel pushed out of the care and support for family members by the clinical team. So many rules can be relaxed, either in hospital, when it comes to cultural food and customs. Due consideration can be given to needs whatever the environment - in-patient, hospice, care home or at home.