A conversation with a carer of someone living with dementia 22 July 2022

The personal responses below are from a carer whose loved one was living with dementia. The questions were developed following informal discussions with carers of people with dementia.

I am not sure if you are asking about palliative care or specialist palliative care.  No one has been able to make the difference clear to me.  I think all patients with a terminal illness need the same kind of care.

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?

  • Patients don’t die of dementia – and their diagnosis happens way before death (usually). By the time the deterioration caused by dementia and/or other illnesses are serious, the patient is probably no longer under the direct care of the dementia service It then depends on how aware the GP is to palliative care services in the area.
  • There is no estimate of time of death that comes with dementia – clinicians don’t always think about end of life when dealing with dementia patients.  Palliative care services may not want to take on the care of a patient when they have no idea how long the patient might live
  • No one who cares for dementia patients clearly has the responsibility for speaking to the patient and family about end of life and their end of life wishes so it just doesn’t happen

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?

  • See above.  
  • Dementia patients often have many different physical conditions which are treated but far too often no one is looking at the whole patient.  They should really be under the care of a geriatrician with support from the dementia psychiatrist.
  • Dementia, in itself, isn’t a terminal illness – which would help clinicians work with patients regarding end of life.  Instead, the slow deterioration of swallowing, mobility, cognition, behaviour do contribute to poor care and developing other conditions.

Q. How could community-based palliative care services be improved for carers and patients diagnosed with dementia?

  • All clinicians caring for dementia patients need to understand that they don’t die to predictably and that they are likely to need some level of end of life care for a long time
  • As patients begin to deteriorate, patients and carers should be referred to palliative care. 
  • I think that a variety of different levels of support from palliative care could be provided: initially emotional support and practical advice (maybe palliative care team could offer on demand help or group sessions) - and then full end of life support when needed
  • Getting the balance right between telling patients that they have dementia and helping them address end of life issues. Someone within the dementia service should be charged with starting end of life discussions.  The Mulberry Centre cancer charity does this well.

Q. What do you have to consider when working with carers and dementia patients from certain faith groups?

  • Sorry – no view on this – except perhaps to make clear that palliative care is NOT assisted dying which may concern some people – but rather dying as comfortably and peacefully as possible

Q. How do we best support families and carers of dementia patients when accessing community-based palliative services?

  • See answers to item 3

Q. Are there any dementia groups that you work with who we could speak to?

  • When I know more about how you plan to involve them, I will suggest groups/individuals to contact.

Q. Any other information that we should take into account?

  • YES – behavioural issues caused by dementia are often a barrier to proper palliative care support. The palliative care service often asks the dementia teams to help with behavioural issues but the dementia teams in mental health services say that they are not staffed or funded to provide this support. That barrier needs immediate attention.

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