The responses below followed a conversation with the Dementia Group for Hounslow in July 2022 about community based specialist palliative care. The overall discussion has been distilled into their answers to the questions below.
Q. When thinking about community based specialist palliative care what are the three main issues that we need to consider when communicating with carers of patients diagnosed with dementia?
- Carers are often already completely exhausted (many of them are angry) and will need emotional as much as practical support (respite) that recognises the particular and long term intensity of their caring role
- Ideally, the palliative care service will come to them, as an open offer of (free) care and support. The current system tends to expect the already stressed carer to self-identify the need for and timing of palliative care
- The carers role as key communicator with the person with dementia/knowing the patient, who may have difficulty expressing their wishes but still have a voice
Q. The evidence tells us that low numbers of dementia patients are referred to community-based palliative care services, in your experience, what are the main reasons for this?
- In the past we have heard GPs advise that palliative care is only available for cancer patients.
- As mentioned above, how can an exhausted carer identify when it is time for palliative care (after many years of gradual decline) and know how to ask for/access it
- Many people with dementia live alone and do not have the appropriate support networks to help them to access services
Q. How could community-based palliative care services be improved for carers and patients diagnosed with dementia?
- Communicate that they exist, are free of charge, and open to contact and questions, long before they are actually needed.
- Many people find themselves leaving it too late to set up the right palliative care. Many people end up with a hospital death when they would have preferred to be at home, particularly where there are co-morbidities. Some medical care teams admit to having a problem meeting dementia support needs in addition to serious medical conditions. The difference between dying with dementia and dying of dementia is important.
Q. What do you have to consider when working with carers and dementia patients from certain faith groups?
- Different customs and sensitivities regarding death and dying, funeral arrangements and bereavement support.
- How can I make a decision about where I want to die, the decision is entirely in the hands of God. If you ask me, how I would like to be cared for when receiving palliative care, at that precise moment, well that is a different question.
- But we don’t know about palliative care, particularly community specialist based, how would we know it even exists? It is down to the NHS to communicate clearly.
Q. How do we best support families and carers of dementia patients when accessing community based palliative services?
- Be person centred, look beyond the dementia. Support the whole family by being accessible and personal. Consistency of single point of contact/small team is preferable.
Q. Are there any dementia groups that you work with who we could speak to?
- Yes, there is Dementia Café and Singing for the Brain group in Hounslow, also a Carers Group and Dementia Cafe in Hammersmith. But many of these groups are attended by people who are not yet using, or necessarily considering, palliative care. So the timing may not be good.
Q. Any other information that we should take into account?
- There was a discussion about language, people don’t know what palliative means, particularly if you are in a group, where English is not your mother tongue. We need to explain things more simply in this complex and distressing time.
- However, palliative is a word and has special meaning, maybe end of life is better, but both are scary. Training sessions to certain groups, like dementia groups, webinars and/or attending their events, communicating and explain things, make these terms more understanding.