Chief Investigator: | Professor Kelvin Jordan |
Principal Investigators: | Dr Michelle Marshall / Dr Paul Campbell |
Funder name / reference number: | Dunhill Medical Trust (RPGF 1711/11) |
Year: | 2018-2020 |
Study Team:
Michelle Marshall1, Paul Campbell1,2, Trishna Rathod-Mistry1, James Bailey1, Carolyn Chew-Graham1,2, Martin Frisher1, Richard Hayward1, Rashi Negi2, Louise Robinson3, Swaran Singh4, Athula Sumathipala1,2, Nwe Thein2, Kate Walters5, Scott Weich6, Kelvin Jordan1
1Keele University, 2Midlands Partnership NHS Foundation Trust, 3Newcastle University, 4University of Warwick, 5University College London, 6University of Sheffield
Video
Click below to watch our video on this study. You can also visit our dissemination tab to view an animation that summarises MEDDIP and its findings.
The number of people living with dementia is increasing. Previous research has looked at what factors increase the risk of dementia, but less is known about how dementia affects people over time once they have been diagnosed.
Most healthcare for dementia is provided by general practitioners and practice nurses. One of the quickest ways to identify common patterns of the course of dementia after diagnosis may be to use existing medical records from primary care. Having the ability to look at the course of dementia over time in these records will help identify people who have a poorer progression and also identify the factors that may be related to this poorer progression.
The aim of the MEDDIP study was to test whether we can identify markers of dementia progression, and identify common patterns of progression, using information stored in primary care medical records. There were 3 stages to the study:
Stage 1
Through i) a review of previous studies, ii) discussions with health professionals, researchers, people with dementia and their care givers, and iii) analysis of a small primary care medical record database, we identified possible markers of progression that can be identified from medical records and are related to dementia. These were grouped into 13 domains.
Stage 2
In a linked study (the CoMed study), we assessed how well these potential markers of dementia progression are associated with changes in the course of the condition as recorded at a specialist dementia service.
Stage 3
We used a large UK-wide primary care medical record database containing records of over 30,000 patients with dementia to find out if these markers are related to longer-term outcomes such as being admitted to hospital and dying earlier.
Impact
We have identified markers of dementia progression that are recorded in primary care, and grouped them into domains. These may help identify individuals who are at risk of a poorer long-term course of their dementia, and hence may benefit from more targeted treatment and care. Some markers are modifiable and targeting these may also help alter the course of someone’s illness. Future research studies may also be able to assess progression and outcomes using these markers, hence potentially saving time and reducing costs of research.
This figure shows the 13 domains of markers of dementia progression that are identifiable in primary care medical records.
Please click here to download a copy of the full figure of domains and associated markers.
An animation and a talking heads video have been produced summarising the MEDDIP and its findings:
Publications
Journal articles:
Campbell P, Rathod-Mistry T, Marshall M, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Singh S, Tantalo-Baker S, Tarafdar S, Babatunde OO, Robinson L, Sumathipala A, Thein N, Walters K, Weich S, Jordan KP. (2020) Markers of dementia-related health in primary care electronic health records. Aging & Mental Health, 1-11. DOI: 10.1080/13607863.2020.1783511
PubMed: https://pubmed.ncbi.nlm.nih.gov/32578454/
Full text: https://www.tandfonline.com/doi/pdf/10.1080/13607863.2020.1783511
Rathod-Mistry T, Marshall M, Campbell P, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Robinson L, Singh S, Sumathipala A, Thein N, Walters K, Weich S, Jordan KP. (2020) Indicators of dementia disease progression in primary care: an electronic health record cohort study. European Journal of Neurology, 1-28. DOI:10.1111/ene.14710
PubMed: https://pubmed.ncbi.nlm.nih.gov/33378599/
Full text: https://doi.org/10.1111/ene.14710
Marshall M, Campbell P, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Rathod-Mistry T, Singh S, Robinson L, Sumathipala A, Thein N, Walters K, Weich S, Jordan KP. (2022) Feasibility of linking markers of dementia-related health in primary care medical records to cognitive function assessed in a specialist dementia service. medRxiv, DOI: 10.1101/2022.10.11.22279756
Full text: https://doi.org/10.1101/2022.10.11.22279756
Conference abstracts:
- Rathod-Mistry T, Marshall M, Campbell P, Bailey J, Chew-Graham CA, Frisher M, Hayward R, Negi R, Singh S, Sumathipala A, Thein N, Walters K, Weich S. (2020) Can early markers of poor long-term outcomes in dementia be identified from primary care electronic health records? Society for Academic Primary Care Annual Scientific Meeting 2020. >>link
- Campbell P, Rathod-Mistry T, Marshall M, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Singh S, Sumathipala, Thein N, Walters K, Weich S, Jordan KP. Can markers of dementia progression be derived from primary care electronic health records? Society for Academic Primary Care Annual Scientific Meeting 2019, Exeter, UK. >>link (Page 166).
- Campbell P, Baker S, Tarafdar S, Babatunde O, Croft P, Chew-Graham CA, Robinson L, Walters K, Singh S, Weich S, Jordan KP. Can markers of dementia progression and outcomes be derived from electronic health records? A systematic review. Society for Academic Primary Care Annual Scientific Meeting 2019, Exeter, UK. >>link (Page 150).
- Campbell P, Baker S, Tarafdar S, Babatunde O, Croft P, Chew-Graham CA, Robinson L, Walters K, Singh S, Weich S, Jordan KP. Markers of dementia progression and outcomes in electronic health records: a systematic review. Health Services Research UK Conference 2019, Manchester, UK.
- Marshall M, Campbell P, Rathod-MistryT, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Robinson L, Singh S, Sumathipala A, Thein N, Walters K, Weich S, Jordan K. (2020) Can markers of dementia progression be derived from primary care electronic health records? 34th Virtual International Conference of Alzheimer’s Disease International – Poster Presentation.
- Marshall M, Campbell P, Rathod-MistryT, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Robinson L, Singh S, Sumathipala A, Thein N, Walters K, Weich S, Jordan K. (2021) Validating primary care markers of the course of dementia through linkage to secondary care records. Society for Academic Primary Care Annual Scientific Meeting 2021 - Oral presentation
- Marshall M, Campbell P, Rathod-MistryT, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Negi R, Robinson L, Singh S, Sumathipala A, Thein N, Walters K, Weich S, Jordan K. (2021) Primary care markers of the course of dementia: validation through linkage to cognitive function recorded in secondary care records. Primary Care Mental Health Research Conference - Oral presentation
- Negi R, Marshall M, Campbell P, Rathod-Mistry T, Bailey J, Chew-Graham CA, Croft P, Frisher M, Hayward R, Robinson L, Singh S, Sumathipala A, Thein N, Walters K, Weich S, Jordan K. (2021) Can markers of Dementia-related health be derived from primary care electronic health records? Royal Society of Psychiatry Faculty of Old Age Annual Conference - Poster presentation.
Contact Information:
Principal Investigator: Dr Michelle Marshall m.marshall@keele.ac.uk
Chief Investigator: Professor Kelvin Jordan k.p.jordan@keele.ac.uk
A systematic review of prognostic factors and inequalities in poor outcome in people with dementia
Chief Investigators: |
|
Funder name/reference number: |
NIHR SPCR (574) |
Year: |
2022-2024 |
Study team:
Michelle Marshall1, Joanne L Jordan1, Ram Bajpai1, Danielle Nimmons2, Tilli M Smith1, Paul Campbell1,3, Kelvin Jordan1
1 Keele University, 2 University College London, 3 Midlands Partnership NHS Foundation Trust
Aim
To identify factors from published studies that have previously been examined for poor outcomes in people living with dementia that predict faster cognitive decline, care home admission and need for palliative care. The review particularly focused on factors that could be assessed in primary care medical records.
Results
After structured and organised searches were undertaken, 46 studies were included in our review. We found 21 studies that investigated 94 factors that might lead to earlier care home admission. There were 26 papers that investigated 60 factors that might lead to a faster deterioration in memory (cognition). Only 1 paper investigated 13 factors that might lead to a need for earlier palliative care.
11 factors that were associated with an increased risk of care home admission and 4 factors that were associated with an increased risk of memory getting worse (cognitive decline) (see Table 1).
Table 1. Factors associated with each outcome
Care home admission |
|||
Increased risk |
No increased risk |
Inconsistent evidence |
Limited evidence |
Older age Less deprived Living alone White race Urban residence Worse cognition at baseline Taking dementia medication Depression Psychosis/psychotic symptoms Wandering Caregiver desire for admission |
BMI/weight Self-reported general health Aggression Agitation Mental health (composite) Cancer Respiratory disease Musculoskeletal disease Polypharmacy Bowel incontinence Hearing loss Urinary incontinence Visual impairment Caregiver mental health Caregiver residence |
Sex Education Marital status Activities of daily living Mobility Type of dementia Behaviour change Hospitalisation No. of comorbidities Cardiovascular disease Cerebrovascular disease (inc stroke/TIA) Diabetes Frailty Currently receives care Caregiver age Caregiver sex Caregiver physical health Caregiver relationship
|
50 factors examined by a single study |
Cognitive decline |
|||
Increased risk |
No increased risk |
Inconsistent evidence |
Limited evidence |
Longer duration of dementia Agitation/aggression Psychosis/psychotic symptoms Hypercholesterolaemia |
Self-reported general health No. of comorbidities Hypertension Cerebrovascular disease (inc stroke/TIA) Depression/anxiety/ irritability Smoking |
Age Sex Education Cardiovascular disease Diabetes Antihypertensive medication Cognition at baseline Type of dementia
|
42 factors examined by a single study
|
We discussed our results with caregivers of people living with dementia, healthcare professionals and dementia researchers to find out if our findings made sense and if they felt there were any factors that were missing, that might be important. They recommended further investigation of 22 additional potential factors (see Table 2).
Table 2. Caregivers, clinicians & researchers' views on factors they felt were missing
Caregiver additional factors suggested |
Clinician/researcher additional factors suggested |
Bereavement |
Bereavement |
Continuity of care within primary care |
Continuity of care within primary care |
Change in living environment/residence |
Change in living environment/residence |
Build-up of number of factors |
Build-up of number of factors |
When factor developed in course of dementia |
When factor developed in course of dementia |
Time to diagnosis |
Dysinhibition |
Caregiver info/knowledge received about dementia |
Increase in number of home visits |
Distance from relatives/caregivers |
Power of attorney |
Physical fighting/violence |
Dietary supplements |
Advocacy, people to support/fight for the person living with dementia |
Oral health (including thrush) |
Referral for imaging |
Conclusion
Examining the evidence for factors that might indicate poor outcomes in people living with dementia is challenging. We found evidence that several factors measurable in primary care healthcare records could alert healthcare professionals to the risk of a faster disease progression.
A number of additional factors were suggested as possibly being important by our caregiver and stakeholder groups, they need further investigation. Also, we found that inequalities may exist in who gets admitted into a care home.
Dissemination and contact information
PROSPERO database:
Marshall M, Jordan J, Nimmons D, Jordan K. Systematic review of prognostic factors and inequalities in poor outcome in people with dementia. PROSPERO 2022 CRD42022338436.
Available from: www.crd.york.ac.uk/prospero/display_record.php?RecordID=338436
Journal articles:
Marshall M, Jordan JL, Bajpai R, Nimmons D, Smith TM, Campbell P, Jordan KP. (2024) Systematic review of prognostic factors for poor outcome in people living with dementia that can be determined from primary care medical records. BMC Geriatr; 24: 801. doi: 10.1186/s12877-024-05389-0
PubMed: https://pmc.ncbi.nlm.nih.gov/articles/PMC11443862/
Full text: https://pmc.ncbi.nlm.nih.gov/articles/PMC11443862/pdf/12877_2024_Article_5389.pdf
Conference presentations:
- Cochrane Colloquium, London, September 2023
Jordan JL, Archer L, Bajpai R, Marshall M, Wynne-Jones G, Jordan KP, van der Windt D. Designing and delivering prognostic factor systematic reviews: challenges and solutions. Cochrane Colloquium 2023 – Poster presentation.
- NIHR SPCR showcase, London, September 2023
Marshall M, Jordan JL, Bajpai RC, Nimmons D, Smith T, Campbell P, Jordan KP. Systematic review of prognostic factors for cognitive decline, care home admission and palliative care in people living with dementia. NIHR School for Primary Care (SPCR) Showcase 2023 – Oral presentation.
- 17th UK Dementia Congress, Birmingham, November 2023
Marshall M, Jordan JL, Bajpai RC, Nimmons D, Smith T, Campbell P, Jordan KP. Systematic review of prognostic factors for cognitive decline, care home admission and palliative care in people living with dementia. 17th UK Dementia Conference 2023 – Poster presentation.
Contact information
Principal Investigators: Dr Michelle Marshall m.marshall@keele.ac.uk & Professor Kelvin Jordan k.p.jordan@keele.ac.uk