Mortality and health service use in dementia and MCI- a mixed methods study

Lead Research Organisation: King's College London
Department Name: Health Service and Population Research

Abstract

There are 850,000 people living with dementia in the UK (1). Dementia is the leading cause of extra deaths in older adults over the age of 70 (2) with the highest mortality estimates found in the first year following diagnosis (3). Mild cognitive impairment (MCI) describes cognitive impairment above normal levels, but does not meet the diagnostic criteria for dementia (4). MCI has been identified as a risk factor for dementia (5,6), and is estimated to affect between 6-12% of older adults over the age of 60. People with MCI also have an increased risk of mortality, compared with cognitively normal adults (7).
The prime minister's challenge on dementia 2020 has identified dementia as a public health priority and highlighted the need for early diagnosis and intervention in dementia (8).
Aims: The overall aim is to investigate which services are used by people with dementia and people with MCI in the first year of diagnosis and the impact these have on mortality estimates.
The specific objectives of this PhD are:
1) In a cohort of people with dementia:
(i) to investigate secondary healthcare service use and predictors of health service utilisation
(ii) to investigate secondary healthcare service use in the first year following diagnosis as a mediator for association with mortality risk
2) In a cohort of people with MCI
(i) to investigate secondary healthcare service use and predictors of health service utilisation
(ii) to investigate secondary healthcare service use in the first year following diagnosis as a mediator for association with mortality risk
3) To investigate the perceived timeliness and value of secondary health care service use in people with dementia, people with MCI and family carers
Methods
Objectives 1(i) & 2(i):
A systematic review will be conducted to investigate predictors of health service utilisation in people with dementia and people with MCI. A meta-analysis will be conducted with two sub-groups: dementia and MCI. The findings will be summarised to show predictors specific to dementia and MCI, and predictors that affect service use in both patient groups.

Objective 1(ii) & 2(ii)
Objective two will be addressed by conducting a retrospective cohort study with two cohorts, one with people with dementia and one with participants with MCI. Participants will be identified using the SLaM BRC Clinical Records Interactive Search application (CRIS). Data from participants who have been assessed and diagnosed with Dementia or MCI will be extracted.
Outcomes: Participants, in both cohorts, will be followed up to their death or the end of the observation time frame. Data linkages are in place with CRIS and the Office for National Statistics mortality records, through HSCIC, which will be used to gather mortality data (12). Secondary health care service use will be extracted from CRIS. Additionally, existing data linkages with CRIS and Hospital Episode Statistics will be used to collect data on number of general hospital admissions and number of bed days.
Analysis: Survival analysis and Kaplan-Meier curves will be used to estimate survival rates in both cohorts. Secondly, proportional hazard cox models will be used to investigate whether the number of health service contacts mediates the relationship between the health service use and mortality in each cohort.

Objective three: perspectives and experiences of health services
Interviews with people diagnosed with MCI or dementia and their carers will be conducted with the aim of understanding the perceived value and timeliness of post-diagnostic treatment and care. An estimated 20 participants with dementia and MCI will be recruited (until saturation is reached). The recordings of the interviews will be transcribed and analysed using an inductive thematic analysis (13).

Synthesis of quantitative and qualitative findings: The findings from all three components of this project will be synthesised using the triangulation protocol (14)

Publications

10 25 50

Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000703/1 01/10/2017 30/09/2027
1916656 Studentship ES/P000703/1 01/10/2017 31/03/2021 Elyse Couch
 
Description This project found an early diagnosis of dementia was associated with a decreased risk of mortality, however there was no difference in the risk of hospitalisation or emergency department attendance. Furthermore, when conducting research on the benefits of non-pharmacological treatments in the early stages of dementia researchers have prioritised cognitive outcomes over measuring quality of life, making it difficult to assess whether early treatments can keep people with dementia living well for longer. Caregivers reported a preference for diagnosing dementia early as it can facilitate advanced care and financial planning, however people living with dementia felt the emotional impact of their diagnosis outweighed the benefits, and both groups felt the post diagnostic support they received was insufficient. We can conclude that value of an early diagnosis is contingent on the care that follows it. These are important findings, which indicate that future dementia policies should focus less on catching dementia early and more on providing comprehensive health and social care.
Exploitation Route Future work is needed to investigate what constitutes good post-diagnostic support, how to measure it, and how to mobilise health services to deliver it.
Sectors Healthcare

 
Description In January 2020, I completed an internship with Age UK where I used the findings from my PhD to recommend a plan for measuring the impact of their national dementia programmes.
Sector Communities and Social Services/Policy
Impact Types Policy & public services