Living Well Until the End

People living in RAC today have higher levels of disability and more complex care needs than in the past. Many residents are living with dementia, organ failure or general frailty. Their dying may be a slow process extending over months or even years.

Quality care for these residents is more than good symptom control and emotional support.
It is about assisting residents to live well and to maintain self-determination, relationships and social connections as their dependence on others increases. It is also about supporting the families of residents. The World Health Organization has acknowledged the needs of a rapidly ageing population. Their Active Ageing policy Framework recognises the rights of all people as they age to “independence, participation, dignity, care and self-fulfilment”. The active refers to “continuing participation in social, economic, cultural, spiritual and civic affairs”. [1]

Researchers have used the active ageing framework to describe determinants of quality of life for people living in RAC. In addition to the WHO criteria, they found that meaningful leisure, having control over their own life and care and participating in the organisation and function were important to residents' quality of life. [2]

Providing an environment where people with Huntington’s disease can maintain maximum independence and control over their lives is especially challenging. Dellafield and Ferrini report on how one nursing home supported residents with Huntington's disease to live to their potential and to die with dignity. [3]

A systematic review of qualitative research on quality of life in RAC identified factors residents say are important to their quality of life. They are:

  • being able to accept and adapt to living in RAC
  • having and maintaining relationships with other residents, staff and with their family and friends
  • a home-like environment, privacy and a sense of their own space
  • competent carer’s who provided individualised care without rushing. [4]

  • Useful Tip

Palliative care is about putting life into their days not days into their lives (Worldwide Palliative Care Alliance).

  1. World Health Organisation (WHO). Active ageing: A policy framework. WHO; 2002 April [cited 2019 Jan 15].
  2. Van Malderen L, Mets T, De Vriendt P, Gorus E. The Active Ageing-concept translated to the residential long-term care. Qual Life Res. 2012 Jun 8. [Epub ahead of print].
  3. Dellefield ME, Ferrini R. Promoting Excellence in End-of-Life Care: lessons learned from a cohort of nursing home residents with advanced Huntington disease. J Neurosci Nurs. 2011 Aug;43(4):186-92.
  4. Bradshaw SA, Playford ED, Riazi A. Living well in care homes: a systematic review of qualitative studies. Age Ageing. 2012 Jul;41(4):429-40. Epub 2012 Jun 7.
Last updated 15 January 2019