Palliative care needs to be part of the "care" package before EOL

[Haylett]

http://www.mayoclinicproceedings.org/article/S0025-6196(13)00452-7/fulltext

A bit of a dense read - but cogent arguments presented by world renowned Mayo clinic to reiterate the point that palliative care does NOT mean End of Life care, but should be brought in much earlier to help ease distress, mental and physical.

I feel very strongly that this is an area in which we as carers should be better informed - and if GPs don't know (they can't be experts in everything), perhaps we need to press harder for referrals to local palliative care centres where they generally offer a much more holistic, person-centred approach to caring.....

 

[nitram]

In the UK we have Amber Care

http://www.ambercarebundle.org/homepage.aspx

is one example chosen at random.

EDIT

Now found the NHS document.

http://www.endoflifecare.nhs.uk/car...end-of-life-approaches/amber-care-bundle.aspx

 

[Haylett]

In the UK we have Amber Care

http://www.ambercarebundle.org/homepage.aspx

is one example chosen at random.

EDIT

Now found the NHS document.

http://www.endoflifecare.nhs.uk/car...end-of-life-approaches/amber-care-bundle.aspx

Nitram, thanks for that - I hadn't heard of Amber Care. I think the fact that it also appears in the NHS EOL care guidelines also supports the point I was trying to make - that we associate palliative care here, with EOL care whereas in fact, a referral to palliative care teams long before EOL could be a useful adjunct to care programmes in dementia

WHO redefined palliative care as long ago as 2002 as: "An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and ease of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

WHO previously defined palliative care as care for those suffering from terminal illness.

I would love to see referral to palliative care specialists as routine for those with dementia. I think it would help to deal with a lot of unresolved pain issues - possibly aggression (without resorting to sedation), and almost certainly, symptoms of dementia such as depression that are often manifest in a much earlier phase of the illness.

 

[Eternity]

Couldn't agree with you more Haylett. It would be so good to have a single place/team to look after those diagnosed with dementia.

Maybe it is our poor experiences but we have the mental health team saying to us "the GP should do this or look at that" and the GP saying the same about the mental health team. No one has a complete picture.

At our last visit to the GP, the GP asked if my mum had any memory problems - I could have thumped him as she has severe Alzheimer's

I live in hope that one day there will be a holistic approach to treatment