How can I improve cancer services for people with dementia?
People with dementia have poorer cancer outcomes so services need to be responsive, which includes being prepared, flexible and offering continuity of care
People with dementia have poorer cancer outcomes than those without. They are more likely to experience treatment complications and poorer overall survival (McWilliams et al 2017). Few interventions are designed for older people with cancer and complex needs, such as those with dementia (Farrington et al 2022).
A study (Farrington et al 2022) identified what was difficult for people with dementia having cancer treatment, including:
- Long waiting times.
- Seeing multiple doctors and nurses.
- The work of coordinating care and treatment of dementia alongside cancer treatment.
And what helped, including:
- Support from a clinical nurse specialist.
- Ability to choose appointment times.
- Having treatment at home or at an outreach centre.
A service should be responsive. Responsiveness describes how health systems can identify and meet each person’s needs and expectations (Mirzoev and Kane 2017). To ensure that an outpatient cancer treatment service for people with cancer and dementia is responsive, we recommend following ‘CLEAR’ steps.
CLEAR steps for a responsive outpatient cancer treatment service
Clarify needs, expectations, preferences and goals
Legitimise these as valid
Enable these to be met by implementing strategies
Audit to ensure this is working for the patient, caregivers and health service
Record for the future
Needs, expectations, preferences and goals should be clarified with patients and caregivers early on, for example using Holistic Needs Assessment (Doyle and Henry 2014) or CHAT&PLAN (Corbett et al 2020).
Performance audit allows a service to see whether it is doing what it set out to do
Services should reflect principles of personalised care (NHS England 2022) so these needs remain central.
- RELATED: Providing cancer treatment and care to people living with cancer and dementia: challenges and research-based recommendations
Strategies will vary between settings based on needs identified and resources available – from simple interventions like contacting patients before treatment to assess specific needs (Farrington et al 2022), to large-scale projects like specialist onco-geriatric services (Gomes et al 2020).
Auditing performance allows a service to see whether it is doing what it set out to do. Research participants told us that having to repeat information to different healthcare professionals was frustrating (Farrington et al 2022). Better documentation would help here.
- RELATED: Be aware of dementia
What is needed to develop cancer outpatient services that are dementia-friendly
To be responsive, outpatient cancer services should ensure:
- The service is prepared: by knowing when people with dementia are attending the hospital. Is there anything specific they need?
- The service offers continuity: by trying, whenever possible, to ensure that the person with dementia is seen by the same healthcare professionals.
- The service makes use of specialist support: by asking for support from Admiral Nurses, specialist practitioners or doctors who specialise in treating older people.
- The service is flexible: by asking whether having an appointment at a certain time would help. If a caregiver needs to attend an appointment, be willing to change arrangements to make this possible.
- The service allows staff to think beyond cancer: by considering how conditions like dementia can be accommodated.
- RELATED: How to avoid dementia misdiagnosis
By understanding what people with dementia and cancer need, and finding innovative ways to meet these needs, we will begin to develop cancer outpatient services that are dementia-friendly (Alzheimer’s Society 2022).
This research was supported by the National Institute for Health Research (NIHR) Applied Research Collaboration Wessex. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. Naomi Farrington is funded by a NIHR Clinical Lectureship (ICA-CL-2015-01-003). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care
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- Alzheimer’s Society (2022) Dementia-friendly Communities
- Corbett TK, Cummings A, Lee K et al (2020) Planning and optimising CHAT&PLAN: a conversation-based intervention to promote person-centred care for older people living with multi-morbidity. PLOS One. 15, 10, e0240516. doi: 10.1371/journal.pone.0240516
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- NHS England (2022) Personalised Care