The need for integrating palliative care in ageing and dementia policies

Abstract

Ageing and dementia is high on policy agendas around the world as is evidenced by recent activities of the European Commission, Council of Europe, World Health Organization (WHO), Organization for Economic Co-operation and Development (OECD), United Nations, the G8 Dementia Summit (11 December 2013) and the European Union (EU) summit on chronic diseases (3–4 April 2014) organized by the European Commission. Motivated by the huge expected increase of the number of people over 80—expected to double by 2050 increasing from 3ċ9 of the population to 9ċ1% in 2050 across OECD countries and from 4ċ7 to 11ċ3% across 27 EU members1—and of older people with reduced physical and mental abilities, these initiatives focus extensively on promoting ‘Active and Healthy Ageing’ (one of five European Innovation Partnerships in the Europe 2020 Initiatives), protecting the human rights of older persons, preventing and delaying neurodegenerative diseases such as dementia and other chronic diseases and improving quality of life and long-term care for people affected by chronic diseases while ensuring sustainable and affordable health care for everybody. Studying these different policy initiatives, it is highly remarkable how little they focus on the importance and added value of palliative care for older people with chronic and life-threatening diseases, and how small the involvement is of palliative care associations in this existing policy work. This Commentary arguments the need for and potential added value of integrating palliative care in policies on ageing and dementia and highlights the need and timeliness to take action. While the aims of prevention and cure or disease modification are undoubtedly necessary in future research and policy, older people are at high risk of dying with complex and multiple conditions and experiencing significant care needs.1,2 Current health policies have focused extensively on preventing illness, but death is inevitable for everyone and is often preceded by a relatively long period of gradual decline and potential complex symptoms and problems. Epidemiological research has shown that older people clearly have special needs that are different and often more complex than those of younger people, including multiple medical problems of varying severity, several long-term conditions with an increased risk of adverse drug reactions and iatrogenic illness, minor problems that have great cumulative psychological or social impact and acute illnesses that lead to physical or mental impairment, economic hardship and social isolation.3 Currently, dementia still is an incurable and life-limiting illness, and recent research has shown the high level of clinical complications and burdensome symptoms among people dying with dementia.4–6 Although healthy ageing and palliative care seem to refer to different challenges at first glance, healthy ageing includes dealing with the specific needs of older people with functional limitation, frailty and co-morbid diseases and providing a care context ensuring that older people can determine how to live the final years of their lives.2 Although traditionally palliative care was almost exclusively focused on cancer and the end of life, it is since 2002 defined by the WHO as an approach that improves the quality of life of all patients with life-threatening illnesses and their families, focusing on physical, psychosocial and spiritual problems. It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.3 The idea that palliative care is relevant only in the last few weeks of life and concerns a stage that can and should be clearly different from a previous life-prolonging or curative phase, has been replaced with the concept that the palliative care approach should be offered increasingly and gradually alongside curative treatment, to support people with chronic progressive illnesses over many years.3,7 This was also recently reaffirmed by the Worldwide Palliative Care Alliance in the Global Atlas on Palliative Care and the WHO resolution on palliative care.8 Hence, palliative care is not only about dying but also about living well with life-limiting chronic illnesses. Important to recognize is that this approach does not imply that all older people should be treated as ‘palliative’ in terms of dying or in a terminal phase of life, but that they would need to be supported in a way that corresponds to the principles important in a palliative care approach. The core values of such a palliative care approach concern person-centredness, quality of life and dignity, patient autonomy, the provision of needs-based (as opposed to diagnosis-based) compassionate care and coordination and continuity of care, which are all values of great importance for frail older people and people with dementia regardless of whether they are at the very end of their life. Current research in palliative care has also shown the potential b