CanDem - The cancer care needs of people with cancer and dementia
Research type
Research Study
Full title
CanDem - Understanding the cancer care and treatment needs of people with co-morbid cancer and dementia
IRAS ID
243475
Contact name
Claire Surr
Contact email
Sponsor organisation
Leeds Beckett University
Duration of Study in the UK
1 years, 1 months, 31 days
Research summary
Summary of Research
Background:
Cancer and dementia are common in old age but little is known about the treatment and care needs of people with both conditions.Aim:
To identify the cancer treatment and care needs of people who have cancer and dementia.Methods:
Interviews and observations will take place with people with dementia and cancer, their families/supporters, and NHS staff working in cancer care. The interviews and observations will focus on the best practices, main problems, and intervention priorities that each group identify in relation to hospital-based cancer treatment and care for people with cancer and dementia.People with cancer and dementia, and their families/supporters, will be identified via local NHS cancer services and through local dementia and cancer community groups. NHS staff will be identified via local cancer services.
Interviews will take place with up to 15 people with dementia, up to 12 family members/supporters of people with dementia and cancer, and up to 12 staff members. Interviews will focus on experiences of cancer services for people with cancer and dementia, including what works well, what could be improved, and the difference these improvements might make.
Observations will take place during cancer treatment, care and clinic appointments for up to 10 people with cancer and dementia. The observations will further explore experiences of cancer services for people with dementia, including the experiences of people who may struggle to take part in an interview. General observations of patient experiences and care within public areas will be used to compare the experiences of study participants with routine care.
Outputs:
The interview and observational data will be used, alongside a large numbers-based study of people with dementia and cancer, to identify best practice and potential practice improvements in cancer treatment and care for people with dementia. The findings will be shared locally and nationally to inform future care planning and delivery.Summary of Results
Background Little is known about the numbers, demographics or healthcare use of people with co-existing, known as, comorbid cancer and dementia, or about their cancer treatment experiences.
Study objectives
- Estimate the UK-population size and describe the demographic and healthcare service-use characteristics of people with comorbid cancer and dementia;
- Identify cancer treatment, care and management priorities and key outcomes for this population;
- Understand the challenges of conducting research with this population.
Methods including PPI
Analysis of ResearchOne data (2005-2016) of people aged ≥50 with Quality Outcomes Framework (QOF) recorded cancer and/or dementia diagnoses and summarised general population comparator data. Ethnographic study using interviews, observations and medical-note review in two NHS-Trusts; participants were people with dementia and cancer, their relatives and healthcare professionals. People affected by cancer and dementia were involved in study design, delivery, monitoring, analysis and dissemination.
Key findings
We identified 3,616 people with comorbid cancer and dementia, which equates to a prevalence estimate of 0.18 per 1,000 people aged 50+ in England in 2017. Of people aged 50+, 7.3% with dementia also had cancer, and 3.1% with cancer also had dementia; of people aged 75+ in either group, 7.5% (or 1 in 13 people) had both diagnoses. People with cancer and dementia were more likely to have additional comorbidities as well as their cancer/dementia and higher healthcare use (e.g. GP appointments) than people with either condition alone.
Balancing cancer and dementia was challenging for all involved. People with dementia experienced challenges navigating multiple appointments, hospital environments that were not ‘dementia friendly’, transport logistics, and managing cancer treatment side effects. Families were crucial role in enabling people with dementia through cancer treatment and care. Where supportive networks were absent, oncology staff struggled to fill this gap. People with dementia and family members sometimes felt ‘in the dark’ around understanding, retaining or accessing information about their cancer, impacting their ability to make informed decisions about treatment.
Dementia impacted on the appropriateness of different cancer treatments and clinicians were often ‘working blind’ due to variable documenting of dementia in clinical records, lacked access to dementia training and struggled balancing the required individualised and flexible care for the person with dementia against the process and target-driven service requirements of high-demands and limited resources. Challenges in this research area include access to, and quality of, large, linked, routine datasets, and sample identification and recruitment via hospitals.
Conclusions
A significant number of older people have dual diagnoses of cancer and dementia. There is a need to adapt oncology services and practice to support people with dementia, families and staff through decision-making around and participation in cancer treatment. Further research is needed to develop and evaluate interventions and implementation of practice changes.
Future plans
We will submit grant applications to address our identified research priorities including developing and evaluating interventions and practice changes. We are working with hospitals to implement our findings and have shared study findings with charities and other organisations who provide care to people with cancer and dementia.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
18/YH/0145
Date of REC Opinion
29 May 2018
REC opinion
Further Information Favourable Opinion