On 16 and 17 March 2015, the Worldwide Hospice Palliative Care Alliance (WHPCA) was delighted to attend the first Ministerial Conference on Dementia at the World Health Organization in Geneva.
The evidence presented at the meeting was shocking. It is estimated that 47 million people are living with dementia worldwide, 62% of whom are living in low and middle income countries.
Lack of diagnosis is a critical problem in all parts of the world but it was estimated that 90% of people with dementia in low and middle income countries go undiagnosed.
Evidence of terrible stigma, the restraining of people with dementia, the high prescription of antipsychotics and generally poor quality care was a common theme.
More than one in three people with dementia do not leave their home more than once a week and carers of people with dementia are 20% more likely to have mental health problems.
In addition, despite the huge burden and the lack of any cure or effective treatment, there is extremely low funding and attention being directed at dementia.
Information from the National Institute of Health in the US showed research funding on Alzheimer’s Disease at $566million while for cancer it sits at $5,418 million. This is despite the fact that the economic burden of dementia is huge, estimated at $604 billion globally.
Palliative care for dementia
So given this context where does palliative care fit in? The WHPCA believes that palliative care is crucial to improve the quality of life of people living with dementia and their caregivers and we issued a statement on the first technical day of the meeting which highlighted our position.
There is huge, yet unknown need of the numbers of people living with dementia who require palliative care, yet dementia is a burgeoning issue, or a ‘tidal wave’ as Margaret Chan, Executive Director of the WHO, stated.
In many ways, there were some very positive signs at the meeting that palliative care needs – including at the end of life – of people with dementia are being considered.
This was seen in the preliminary results of a scientific research prioritisation exercise by the WHO which saw ‘quality of life of people living with dementia and their caregivers’ as one of the 7 priorities of the research agenda and, importantly, end of life care and care in the later stages as one of the 10 priority avenues of research.
The Organisation for Economic Co-operation and Development (OECD), a key international player in the response to dementia, has 10 priorities for dementia, one of which is ‘people living with dementia die with dignity in the place of their choosing’.
In addition, countries such as Switzerland and Croatia particularly mentioned palliative care in their interventions and others, such as Saudi Arabia, used very familiar language including ‘adding life to years, as much as years to life’.
Materials prepared for the conference were very person-centred including a specific hand out on person-centred care. Language throughout the conference was highly focussed on quality of life and human rights and the voice of NGOs and people living with dementia and their carers was evident throughout the meeting.
In addition, there were strong discussions about caregivers and their needs, as well as the need for coordination between health and social care systems.
However, in the call to action that was formulated and released by member states on the final day of the meeting, there was no specific reference to palliative care or end of life care.
This was disappointing, but it is hoped that there will be a resolution on dementia in 2016 where we can work towards the strong inclusion of palliative care and end of life care for people with dementia.
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