The transition from cognitive
impairment to dementia
Older people’s experiences
Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)
The ‘Transitions’ Project
• Aim: To understand the experiences, expectations and service
needs of the person who is becoming the person with dementia,
from the perspectives of the older person and their supporter.
• Qualitative interview methodology in 3 sites
• Outputs:
– evidence about what people want at this transitional stage
– a model of care for those newly diagnosed with dementia and
their supporters
– inform the implementation of the Dementia Strategy
Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)
Study Sites
Newcastle University and NT&W NHS Trust
and Northumbria Healthcare NHS Trust
John Bond, Louise Robinson and Clare Abley
University of Manchester and
GMW Mental Health NHS Foundation Trust
John Keady, Sue Watts and Sarah Campbell
King’s College London and CNWL NHS Trust
Jill Manthorpe, James Warner and Kritika Samsi
Additional grant-holders
Claire Goodman, Steve Iliffe, Vari Drennan
Literature Review – Method
• Update of systematic review on disclosing a
diagnosis of dementia (Bamford et al 2004)
• 926 abstracts screened; majority failed inclusion
criteria
• 129 full papers screened; 57 papers relevant to
topic; 32 papers included in final review
Literature Review – Themes
• Most people wish to know their diagnosis, although majority can
not accurately recall it
• ‘Alzheimer’s Disease’ appeared to have more negative
connotations than ‘dementia’
• Lack of information before and after diagnosis; but type and
nature of information preferred not identified
• Triggers for help-seeking not identified
• Short-term distress at diagnosis not always long-term
• Most people with dementia come to terms with the condition
• Family carers commonly become decision-maker and adjust to
responsibility
• Implications of review: diagnosis should be a process with
follow-up; planning for future should be discussed
Interview Schedule Topics
• Triggers for help-seeking behaviour
• Experience of assessment and support at pre-diagnosis stage
• Experience of diagnostic process and support at post-diagnosis
stage
• Experience of receiving a diagnosis
• Expectations, feelings, experience of medication
• Other support from services (medical, psychosocial, emotional)
and gaps in service provision
Sample
Total: 28 people with memory problems; 26 carers/ supporters
Newcastle: 9 people with memory problems; 7 carers/supporters
London: 6 people with memory problems; 3 carers/ supporters
Salford: 13 people with memory problems; 16 carers/ supporters
Most interviews conducted before and after diagnosis
In some cases, single interview conducted within 2 months of
receipt of a diagnosis
Emergent Findings
• Living with uncertainty
• Limited written information
• Subjective experience of waiting between
assessment and diagnosis
• Expectations from service support
• Information needs and communication
Living with uncertainty
• Lack of clarity of assessment process
• Uncertainty continues after diagnosis – people uncertain of
process and timing of deterioration
• Fear of reduced autonomy, care, dependency and so on
• Related anxiety perhaps mitigates some of the diagnostic relief
they may have otherwise felt?
I’m not getting better; I’m not getting worse, what does that
mean? (Person with diagnosis of dementia)
Information
• Limited written information received throughout assessment and
diagnosis
• Reliance on other sources, (e.g. internet, friends) and experiences of
caregiving
• Greater need for more information on clarity of assessment process,
what to expect, options and support at time of first encounter with
services
I think probably the – it would help for some clarity at the beginning
when the diagnosis is done and explanations and clarity and where you
go from there you know what sort of course of actions should be taken
and treatment I think that would help so that you see a chain of
something progress through the business. (Carer of person with
diagnosis of dementia)
Waiting time
• Difficult process of waiting between assessment and
diagnosis
• Little information offered about assessment process
• Context of public perception of importance of early
intervention
We're still waiting for something to happen. Because they
reckon early diagnosis don't they and then they can do
something and try and hold it if that is the case. Give you
something to slow it up a bit. But we're still waiting. (Carer
of person with memory problems)
Expectations of services
• Two outcomes generally expected from active help-seekers
(1) no memory problems, no diagnosis
(2) presence of cognitive impairment & diagnosis given
• Possibility of ‘no prescription’ or no further support not considered
• Scans seen as definitive indicators
• Little understanding of complexity of making a dementia diagnosis
All we want is a diagnosis and either they say 'yay or nay' with
some sort of a tablet or medicine. If it is Alzheimer's they do have
things to slow it up don't they, slow the progress. (Carer of person
with memory problems)
Information & communication
• Distinction required between standardised information (e.g.
booklets about dementia) and individualised information (e.g.
addressing unanswered questions)
• Examples of poor practice identified: better systems and
processes need to be in place
– Person receiving copy of a letter outlining an individual
clinician’s impression i.e. likely diagnosis of Lewy Body
Dementia
– Person receiving copy of letter to GP written in medical
jargon.
• Lack of clarity of where future queries can be directed – GP or old
age psychiatrist?
Early implications
• Disclosure of the diagnosis should be a process, not a
one-off event
• Need for people to be ‘held’ from time of first encounter
• Explaining this in early encounters may help manage
expectations of services and medication
• Need for information through all stages of diagnosis
• Individualised information giving should be developed
and prioritized
• Systems and processes for communicating key
information to individuals and their carers - to be clarified
by clinical teams
Acknowledgements
Thank you to all participants who willingly shared
their stories with us. We are also grateful to our
Local and National Advisory Groups for their
valuable input and to all grant-holders for their
support.
For further information, please contact Professor
Jill Manthorpe: jill.manthorpe@kcl.ac.uk or Kritika
Samsi: kritika.1.samsi@kcl.ac.uk
Disclaimer
This project was funded by the National Institute for Health
Research Service Delivery and Organisation programme (project
number 08/1809/229). The views and opinions expressed herein
are those of the authors and do not necessarily reflect those of
the Department of Health.