The transition from cognitive impairment to dementia

1. The transition from cognitive impairment to dementia Older people’s experiences Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)

2. Research team London: Jill Manthorpe, Kritika Samsi, Kalpa Kharicha, James Warner Manchester: John Keady, Sarah Campbell, Sue Watts Newcastle: John Bond, Louise Robinson, Clare Abley, Alan Gemski Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)

3. 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)

4. 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

5. 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 Robinson L, Gemski A, Abley C, Bond J, Keady J, Campbell S, Samsi K, Manthorpe J. The transition to dementia- individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics 2011, (epub ahead of print).

6. 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 Clare Goodman, Steve Iliffe, Vari Drennam

7. London: an inner London Borough with a relatively younger population – 11% over 65. Multi-cultural with over 100 languages spoken. North East: 2 sites – one urban and one rural Urban site: 270,000 population, low proportion of Black and Minority Ethnic groups within the population. In 2008: 60 people with young onset Dementia, 3000 late onset Dementia Rural site: 200,000 population with in 2008, 50 people with young onset Dementia and 2500 late onset Greater Manchester: 200,000 population with 20% over 65. It is predominately urban. High levels of poor health – significantly worse than the national average on 24 out of 32 key indicators, including some of the highest rates for alcohol misuse, smoking, heart disease and stroke. Research Sites Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)

8. Ethical approval was granted by Newcastle and North Tyneside REC 1. Purposive sampling was used to recruit from four memory clinics (one in London, one in north west and two in the north east). Participants were recruited retrospectively (dementia diagnosis already disclosed) and prospectively (not yet received a diagnosis – some had a diagnosis by the time of the follow up interview). Semi Structured interviews (using a topic guide) were held with people with memory problems and their carer/supporters in their own homes. Where possible follow up interviews (after minimum of 3 months) were held to explore how things had changed. Analysis was based on the constant comparative method. A thematic table was developed according to early analysis and subsequently revised many times by the analysis team. Methods Funded by the NHS Service Delivery and Organisation R&D Programme (2008 – 2010)

9. 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

10. Sample Total: 28 people with memory problems; 26 carers/ supporters Newcastle: 9 people with memory problems; 7 carers/supportersLondon: 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

11. Emergent Findings Living with uncertainty Limited written information Subjective experience of waiting between assessment and diagnosis Expectations from service support Information needs and communication

12. 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)

13. 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)

14. 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)

15. 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)

16. 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?

17. 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

18. 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. Manthorpe J, Samsi K, Campbell S, Abley C, Keady J, Bond J, Watts S, Robinson L, Gemski A, Warner J, Goodman C, Drennan V and Iliffe S (2011) The transition from cognitive impairment to dementia: older people's experiences. (Project Report) NIHR SDO Programme. For further information, please contact Professor Jill Manthorpe: jill.manthorpe@kcl.ac.uk or Kritika Samsi: kritika.1.samsi@kcl.ac.uk

19. 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.