Alzheimer’s – The Case for Palliative Care
Alzheimer’s is a terminal illness and I want to discuss the implications of this. I am putting forward the case that everyone suffering from late-stage Alzheimer’s should be treated appropriately, in the same way that they would be treated if they were suffering from any other kind of terminal illness.
What is a terminal illness?
“Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer.” Wikipedia
Palliative Care for Alzheimer’s Sufferers
People suffering from terminal illnesses are offered palliative care. The fact that Alzheimer’s will eventually end the life of the sufferer is not in question – it is a terminal illness. So why is everyone who is suffering from late-stage, stages 5-7, or at least end-stage Alzheimer’s, not offered palliative care?
There are a number of reasons why I think this has been overlooked. Unlike most other terminal illnesses, Alzheimer’s is a long drawn out disease, stretching over many years, on average seven years after diagnosis. Because the decline is slow and gradual there is a general acceptance of it. Another reason I think it has been overlooked is that palliative care, as in the care and treatment of cancer, involves palliative medical care, but in Alzheimer’s this is normally not required. So what kind of palliative care is required?
Palliative care also takes care of the emotional and spiritual needs of the individual and I am making a case for recognising the need for this kind of care for people with Alzheimer’s. But how might this be given when the person has lost their faculty of speech, their inability to recognize their nearest and dearest and their ability to communicate in the ‘normal’ way? I will address this question more fully in another blog.
Change Perception and Care.
In this blog I want to flag up the need for palliative care for everyone with end-stage Alzheimer’s. Yes it is happening in a few places but it needs to become standard practice, everywhere. One of the prime movers in this field is Joyce Simard. She set up The End-of-Life Namaste Care Programme for people with dementia. This programme provides the particular kind of care a person with dementia needs at the end-of-life and it is administered with compassion and love, usually in care home facilities. It has been implemented in a number of care facilities in the US. Here in the UK a pilot study has just been completed and the principles are being adopted by innovators in the field such as, David Sheard, Dementia Care Matters, and introduced to some care training programmes and care homes.
Anyone can do it
When my mother had late-stage Alzheimer’s, stages 5-7, although I had never heard of The Namaste Care Programme, I intuitively engaged with her in same kind of ways that are recommended in this programme. So, although The Namaste Care Programme provides useful guidelines, anyone can give informal palliative care, be it a family member or professional carer if they feel compassion and love, have the desire to communicate in a variety of ways and are creative in their approach.
If you are involved with someone who has late-stage Alzheimer’s, ‘just do it’. Discover how wonderful it is to connect and engage in this special way. Open up a conversation about this approach with the care facility. If they are not already offering this kind of care, talk to them and raise their awareness. Maybe buy the book, read it and give it to them.
For more information:
The Namaste Care Programme see: http://www.namastecare.com
The Namaste Care Program by Joyce Simard, ISBN 978-1-932529-14-0
Dementia Care Matters: http://www.dementiacarematters.com
Looking forward to the next stage of our journey.
Maggie La Tourelle