7. Services for People with Severe Dementia

  1. Hugo de Waal MD, FRCPsych, FHEA2,
  2. Constantine Lyketsos MD, MHS3,
  3. David Ames BA, MD, FRCPsych, FRANZCP4 and
  4. John O'Brien BA, BM BCh, MA, FRCPsych, MD5
  1. Betty S. Black and
  2. Peter V. Rabins

Published Online: 7 JUL 2013

DOI: 10.1002/9781118378663.ch7

Designing and Delivering Dementia Services

Designing and Delivering Dementia Services

How to Cite

Black, B. S. and Rabins, P. V. (2013) Services for People with Severe Dementia, in Designing and Delivering Dementia Services (eds H. de Waal, C. Lyketsos, D. Ames and J. O'Brien), John Wiley & Sons, Ltd, Oxford, UK. doi: 10.1002/9781118378663.ch7

Editor Information

  1. 2

    Lead Consultant, Norfolk Dementia Care Academy, Norwich, UK

  2. 3

    Associate Postgraduate Dean, East of England Deanery, Cambridge, UK

  3. 4

    Elizabeth Plank Althouse Professor, Director of the Johns Hopkins Memory and Alzheimer's Treatment Center, Johns Hopkins Medicine, Maryland, USA

  4. 5

    Director, National Ageing Research Institute, University of Melbourne Professor of Ageing and Health, Victoria, Australia

Author Information

  1. Department of Psychiatry and Behavioral Sciences, the Johns Hopkins University School of Medicine and the Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Hospital, USA

Publication History

  1. Published Online: 7 JUL 2013

ISBN Information

Print ISBN: 9781119953494

Online ISBN: 9781118378663



  • severe dementia;
  • family caregivers;
  • long-term care;
  • nursing homes;
  • community-based care;
  • palliative care;
  • end-of-life care;
  • ethical issues;
  • caregiver support


People with severe dementia and their family caregivers require an array of services to address the complexity of their needs. While most people with severe dementia are cared for in long-term care facilities, a minority is cared for in the community. Their service needs are based on the severity of cognitive and functional impairments, behavioural and neuropsychiatric symptoms, medical co-morbidities and proximity to the end-of-life. Ethical issues in severe dementia involve balancing autonomy with the safety and wellbeing of persons with dementia and their caregivers. Family caregivers need educational and emotional support and guidance for proxy decision-making. The goals of care that prioritise comfort in severe dementia are supported by a palliative approach to care and the recognition that effective interventions are available to maximise quality of life while respecting the dignity of the individual.