European Model of Palliative Care for
Dementia: Study Protocol
Nathan Davies1, Steve Iliffe1, Jill Manthorpe2 and Sam Ahmedzai3
1UCL,
Research Department of Primary Care and Population Health, Royal Free Campus, Rowland Hill St., London,
NW3 2PF
2Social Care Workforce Research Unit, King's College London, Aldwych, London, UK
3Department of Oncology, The Medical School, Beech Hill Road, Sheffield
Background
Palliative Care Model of Dementia
With an ageing population, people living with dementia is expected to continually rise to 81 million affected by
20401 and 115 million worldwide by 20502. Generally, as the disease progresses, memory and other cognitive deficits
become worse, together with a loss in mobility, self-care abilities, poor nutrition, and a breakdown of skin. In the
final stages, it is common to have urinary tract infections, skin ulcers, pneumonia and many other complications. As a
progressive and eventually fatal illness, a palliative care approach for dementia is generally accepted as the best
option.
Based on the themes and responses generated thus far from the interviews together with existing literature and
literature reviews, the following model of palliative care has been developed. This is a model which will continue to
develop and will aid the development and successful implementation of quality indicators.
Over the past decade there has been increased attention and research into dementia and end of life care3. However,
there is a general lack of research in this field4 and more research is needed for this group of people.
Generalists
(e.g. Geriatrician)
Despite the growing number of people with dementia and the fact that many palliative care services now care for
non-cancer patients, people with dementia are rarely referred to such services5. Palliative care and models of care are
well established and have long been used within cancer. However, this is still underdeveloped within dementia.
Transferring these models of care directly from cancer may be inappropriate6 and they may not be successful in
dementia.
Aim
The aim of the current research is to gain an insight into palliative care for dementia across Europe. Using this
information we aim to develop a model of palliative care for dementia which is suitable for European health care
systems. The model will be used to identify and aid the implementation of quality indicators in this field.
Non PC Specialists
PC Specialist
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
Diagnosis
and
Prognosis
Self-care
Active treatment
Rising risk
Rising complexity
End-of-life care:
Death
Bereavement
PALLIATIVE CARE
Method
Fig 1. The basic model of palliative care in dementia.
Design
A mixed methodology was used to enable the triangulation of data to develop an understanding of palliative care for
dementia and a model to fit this.
Document
Analysis
Non PC Specialists
PC Specialist
Generalists
(e.g. Geriatrician)
Literature
Reviews
Fidelity to prior
preferences
Symptoms controlled
Family satisfaction
Appropriate setting
(home or hospital)
Psychological &
Spiritual needs met
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
Interviews
Diagnosis
and
Prognosis
Self-care
Active treatment
Rising risk
Rising complexity
End-of-life care:
Death
Model of Palliative Care
Bereavement
Participants
Thirty-nine interviews were conducted with professionals such as general practitioners, nurses, researchers, care
home managers and policy leads. A further focus group was conducted consisting of six professionals from micro,
meso and macro levels of health care services. Interviews took place within five European countries including the
United Kingdom, Germany, the Netherlands, Italy and Norway.
PALLIATIVE CARE
Prior preferences established with family involvement & patient: advanced directives etc.
UK example: Liverpool
Care Pathway
Fig 2. Quality indicators of good end of life care and of a good death related to outcome in dementia.
Procedure
1.Three Literature reviews of indexed peer-reviewed publications were conducted. These are:
• Palliative care services for people with dementia: a synthesis of the literature reporting the views and
experiences of professionals and family carers
• Palliative care for people with dementia: a review of reviews
• Evaluating educational initiatives to improve palliative care for people with dementia: a narrative review of
the evidence
Non PC Specialists
PC Specialist
Evidence of care co-ordination
Evidence of
increased skills
Generalists
(e.g. Geriatrician)
Community orientation
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
2.The existing literature surrounding palliative care and dementia was examined including documents such as the End
of Life Care Strategy, National Dementia Strategy .
3.Face to face structured interviews or telephone interviews where face to face was not possible, were conducted with
national experts in the five European countries. Four open questions were used. These include what aspects of
palliative care for dementia professionals would wish to improve on and what they would want to export to another
country. The interviews were supplemented by the use of vignettes. The vignettes described clinical cases based on
existing literature. They were used to enhance the understanding of behaviour and attitudes in this area. Interviews
were recorded for transcription or captured using contemporaneous note taking.
Diagnosis
and
Prognosis
Active treatment
Self-care
Rising risk
Rising complexity
End-of-life care:
Death
Bereavement
PALLIATIVE CARE
UK example: Gold Standard Framework in operation; pain control: use of
assessment tools, psychosocial needs met; Nutrition: assessed, few PEG tubes
used; Infection management agreed; Prognostication tools used
Training and
continuous learning;
audit of outcomes
Stable leadership &
workforce, staff skill mix
Analysis
Recorded interviews were transcribed verbatim and together with the notes, will be analysed using thematic analysis.
Fig 3. Quality indicators of good palliative care related to structure in dementia.
Results
Conclusions
Interview Themes
It is possible to collaborate across European countries using mixed methodologies to produce a complex model of
palliative care which is capable of aiding the development and implementation of quality indicators. More interviews
will be conducted to identify themes in order to improve palliative care for dementia. This model will then be used to
develop and implement quality indicators to improve palliative care for dementia.
This is an on-going piece of research where additional participants will be interviewed to inform the continuous
development of a model of palliative care for dementia. The interviews have so far revealed a variety of themes
containing what currently work well for people dying with dementia and what would be recommend to other
countries. These include:
Gold Standards Framework (in England)
Liverpool Care Pathway (LCP)
Doctors in nursing homes (the Netherlands)
Home care (Italy – regional differences)
In addition to what works well for people dying with dementia, the following themes have so far been identified as
areas that need improvement for people dying with dementia:
Education of staff/professionals
Need for a structured system/pathway
Diagnosis/Prognosis/Recognition of dementia
Communication
Advanced Care Planning
Coordinator/case manager
References
(1) Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi
consensus study. Lancet 2005 Dec 17;366(9503):2112-7.
(2) Alzheimer’s Disease International. World Alzheimer’s report, 2009.
http://www.alz.co.uk/research/files/WorldAlzheimerReport-ExecutiveSummary.pdf. Accessed on 19/09/2011.
(3) Van Der Steen JT. Dying with dementia: What we know after more than a decade of research. Journal of
Alzheimer's Disease 22 (1) (pp 37-55), 2010 Date of Publication: 2010 2010;(1):2010.
(4) Sampson EL. Palliative care for people with dementia. British Medical Bulletin 96 (1) (pp 159-174), 2010 Date of
Publication: December 2010 2010;(1):December.
(5) National Council for Palliative Care. The power of partnership: Palliative care in dementia, 2009.
(6) Sampson EL, Burns A, Richards M. Improving end-of-life care for people with dementia. British Journal of
Psychiatry 2011 Nov;199:357-9.
If you would like further information please contact Nathan Davies: nathan.davies.10@ucl.ac.uk