1. Dying with Dementia: an intelligence overview for the East Midlands
Rebecca Elleray – Senior Public Health Intelligence Analyst
Public Health England
EOL event March 30th

2. Objectives
Explain who I am and the role of PHE’s Local Knowledge and Intelligence Service
What data and tools are available
What the intelligence tells us about
The trends in dementia deaths over time
Who are the people dying with dementia
Where are people with dementia dying
What are they dying from
Rebecca Elleray EOL event March 30th

3. Knowledge and Intelligence Service – East Midlands
Rebecca Elleray EOL event March 30th

4. Data and Intelligence Tools
Fingertips Dementia Profile – Mental Health, Dementia and Neurology 2. End of Life Care Profiles – National End of Life Care Profiles 3. Atlas of Variation - Health Care variation – PHE and Right care Dying with dementia suite of products - Spend and Outcomes Tool - Commissioning for Value Packs - Cost-effective commissioning of end of life care - Full list of data – Dementia data catalogue
Explain different tools available and what I will be drawing on
Rebecca Elleray EOL event March 30th

5. Are there changes in dementia deaths over time?
Directly age-standardised rate of dementia deaths in the 65 and overs,
Number of deaths with a mention of dementia per 100,000 population aged 65 and over – directly standardised means that any differences in the age profiles of areas are removed – dying with dementia may be strongly associated with different age groups and so if we want to investigate the other factors that may be contributing to mortality from dementia in an area, we need to control for differences in age between areas.
Around these rates we calculate confidence intervals which allow us to say that, given the effect of chance, this is the amount of variation around the mortality rate that we expect to see within a population. Comparing these confidence intervals allows us to assert whether the rate for one area is statistically significantly different to another rate for another area, because if the values that represent the limits of these confidence limits do not overlap, there is something other than chance causing the difference.
So confidence intervals and age standardisation allow us to say that values over time or across areas are different due to other things that chance or differences in age
Across years, East Midlands has been significantly higher
Rebecca Elleray EOL event March 30th

6. Who are the people that die with dementia?
At England level 13% of men and 20% of women aged 60 and older die with dementia The highest proportion of deaths for men and women with a mention of dementia occur at age % and 29% respectively. The data suggests that people who live in more deprived areas are more likely to die younger with dementia. The difference is small but statistically significant Analysis by dementia subtype revealed that this difference is greater for deaths with a mention of vascular dementia
Commissioners and providers to take account of the level of need in their population based on factors such as deprivation, because the needs of people with dementia and their carers will vary accordingly
Rebecca Elleray EOL event March 30th

7. Who are the people that die with dementia?
Death rates in those 75 and over are significantly higher than the England average in the East Midlands
Rebecca Elleray EOL event March 30th

8. Where do people with dementia die?
At England level For people aged 20 to 64 with dementia, the proportion of deaths that occur in care homes is significantly higher than in hospitals and lower for deaths at home or in hospices compared with all deaths in this age group For people aged 65 and over with dementia, this difference is more pronounced - deaths are more likely to occur in care homes and less likely to occur in hospitals, at home or in hospices compared with all deaths in this age group Hospital deaths have decreased 2006 and care home deaths increased. The number of deaths that occur at home have significantly increased over this period, although are still comparatively smaller A higher proportion of deaths in care homes of people born in the UK and Germany, whereas a higher proportion of people born in India and Pakistan have deaths recorded at home
Reasons for the shift from hospitals to care homes may be due to initiatives such as the Community Care Act (2003)
Rebecca Elleray EOL event March 30th

9. Where do people with dementia die?
In the East Midlands, by age group
Rebecca Elleray EOL event March 30th

10. What do people with dementia die of?
At England level The commonest underlying cause of death for people with a contributory cause of dementia was stroke, Parkinson’s disease and ischaemic heart disease 38% of deaths for people aged 65 and over with a mention of dementia also have a mention of respiratory disease 36% of people aged 65 and over with a mention of dementia also have a mention of circulatory disease 9% of people aged 65 and over with a mention of dementia also have a mention of malignant cancer Having dementia in addition to one of the three major mortality groups changes the picture of place of death, with significantly more deaths in care homes and less at home
Development of the All-Party Parliamentary Group recommendation to introduce a GP-led holistic review to address all conditions a person may have rather than individual reviews for each condition, so that the physical and mental health needs of a person with dementia are met
Rebecca Elleray EOL event March 30th