When someone suggested that matching my breathing with my patient’s breathing might be a good way to start communicating, I realised that my ten years’ experience as a clinical nurse specialist in palliative care had not fully equipped me for my new role as Nurse Facilitator for End of Life Care for People with Dementia.
Learning about palliative care for people with dementia and their families continues to be a steep learning curve.
As I became more confident, I also felt less satisfied with my role. Dame Cicely Saunders summarised the essence of palliative care when she said: “You matter because you are you, and you matter to the end of your life, and we will help you not only to die peacefully, but to live until you die.”
But what is quality of life for people who can’t talk, or walk, or recognise their spouse, or their children? The Namaste Care programme1, pioneered by Joyce Simard in the USA, provides some answers and a way forward.
‘To honour with spirit’
‘Namaste’ is an Indian greeting and the name was chosen for the meaning, ‘to honour the spirit within’.
The Namaste Care programme integrates compassionate nursing care with meaningful activities, and takes place seven days a week in a welcoming, attractive space protected from interruptions.
Namaste Care is based around the five senses, using music, massage, colour, tastes and scents, to connect with people with advanced dementia, providing one-to-one care in a group. There is nothing new in Namaste Care, but the programme structures care to focus on residents’ well-being, rather than priority needs/tasks. Comfort and pleasure are the aims of the Namaste Care programme, with the ultimate goal of a peaceful dignified death in the familiar care home.
St Christopher’s Hospice and the South London and Maudsley NHS Foundation Hospital Trust set up an action research study to find out if Namaste care could work in UK care homes, and to evaluate the impact of the care programme on residents, care workers and relatives. The research report is available via the St Christopher’s website.
We found that where there is strong leadership and good nursing and medical care the Namaste Care programme can significantly improve the quality of life of residents with advanced dementia by reducing behavioural symptoms, such as agitation and lethargy.
We saw profoundly disabled residents making more eye contact, trying to talk, or responding to music. Two relatives, in separate care homes, described their family member (wife and mother) as, ‘more alive’.
Care staff and family members enjoyed the care programme and found it rewarding. We learned that we were not doing the Namaste Care programme ‘for’ residents, but ‘with’ them. Namaste Care supported relationship-based, compassionate care for frail care home residents with advanced dementia at the end of their lives.
We have developed a ‘toolkit’/manual incorporating the learning from the research study into an educational resource which is a part of a training package supporting care homes to implement the Namaste Care programme.
For further information on this programme you can contact Min at email@example.com
- Simard J (2013) The End-of-Life Namaste Care Programme for People with Dementia. (2nd ed) Health Professions Press: Baltimore, U.S.A