Understanding the care and support needs of nursing home residents with dementia and comorbid cancer
There were an estimated 9.9 million new cases of dementia in 2015, and the number of older people with dementia in England is projected to almost double from 2015 to 2040. One in two people will now develop cancer in their lifetime in the UK. It is predicted that with the aging population by 2040 nearly one quarter of people ages over 65 years in England and Wales will have been diagnosed with cancer. Therefore, the number of older people with dementia and cancer is also likely to rise. Dementia and cancer are individually complex conditions that require treatment and care, this has resulted in a growing proportion of people living with comorbid conditions residing in nursing settings. People with dementia and cancer are often diagnosed at a later stage, receive less treatment and have a poor chance of survival. However, very few studies, and none in the United Kingdom, have examined the care and support needs of people with DCC living in nursing homes.
I carried out a study that aimed to understand the care and support needs of residents with dementia and cancer, and the challenges and positive aspects of care delivery. In this blog I will share what I found.
What did I do?
I observed nursing homes for 10 months following the care experiences of residents with dementia and cancer, and routines and daily practices delivered by staff and visiting healthcare professionals. This included observing communal areas, mealtimes, staff handovers and care delivered in resident bedrooms, although, no intimate acts of care were observed. I also interviewed staff members, healthcare professionals, and relatives about their experiences, this included having informal talks with residents in the home who have dementia and cancer. I also looked at care plan documentation of people who agreed to be observed.
What did I find?
I found the decisions made surrounding a resident with dementia and cancer care were complex. Residents often were unable to express their own wishes when seeking further investigations for a potential cancer diagnosis or treatment at a hospital. These decisions were made by families, nursing home staff and healthcare professionals. However, this did not come without its challenges, such as, managing the expectations of families and what cancer care and treatment was feasible and in line with the resident’s care needs.
While gaining an early cancer diagnosis is deemed both desirable and best practice in terms of its management, these physical and well-being barriers often impacted a resident’s ability to access oncology services to receive a diagnosis or treatment:
- Avoidance of distress for the person with dementia and cancer -“R001, he’s a panicker and a worrier and he would stay up all night if he knew he had bowel cancer...” (Nursing home staff)
- The responsibility and accessibility of transport to hospital services - “It got increasingly difficult for me to get him, to get into my car and to drive there, then to find somewhere to park which wasn’t too far from the entrance, and often that wasn’t possible.” (Family)
- “Dementia-friendly” hospital environment - “I’ve been to appointments with people where theirs nurses are asking questions or becoming quite judgemental and I always stop them in their tracks. They just don’t have a clue sometimes and that’s something I really am aware of." (Nursing home staff)
If residents were unable to access hospital for treatment and care, they were dependant on nursing home staff to manage cancer care. However, due to staff’s incomplete knowledge about a resident’s cancer and how to manage this, their condition was often overlooked in care documentation and in practice by dementia:
- “I think you could almost say that dementia certainly colours how you see the disease." (Family)
- “I feel like there is no difference between caring for a resident with both conditions and those without. You don’t look at the cancer, you look at dementia that’s more important…”(Nursing home staff)
This resulted in a resident’s dementia needs being prioritised. However, by overlooking a resident’s cancer it can result in three consequences:
- Misattribution of symptoms to a resident’s dementia - “CMHT who has been asked to review the patient and they’ve come back and said they feel its pain. So obviously then I’ve gone back to the staff and said what’s your opinion and they were like well we don’t think it is.” (Palliative care team)
- Reactive responses to cancer care - “His moods are changing. He’s going off his food, he’s tired more. He’s getting more aggressive, there all dementia traits as well but they are massively out of character for dad even when he’s had really wobbly dementia days.” (Family)
- Inadequately managed cancer symptoms -“It's PRN, it’s for leg pain and that resident has become immobile and is not sleeping and is crying out a lot and going, 'mummy, mummy' and rubbing their legs. So, the connection between the two isn’t being made.”
Nursing home staff are essential to the delivery of efficient dementia and cancer care. Although some recommendations for practice require further planning, care for residents with both conditions could be improved by making some small changes to everyday care:
- If GP referral is made, discussions with families, healthcare professionals, residents, and staff need to be done to outline logistics of accessing oncology services.
- If referral isn’t made, important to follow up with external links (i.e., Palliative care teams) to successfully identify cancer care needs.
- Conduct a pain assessment that integrates dementia and cancer, to identify potential symptoms (i.e., pain) and misattributions. This should be documented in care plan records.
- Work with local Palliative care teams to identify training needs and gaps in knowledge for nursing home staff (i.e., how to support decision-making, use syringe drivers, symptom management).
Acknowledgements and Funding
This project was funded by Abbeyfield and supported by a lay advisory group and supervisory team: Laura Ashley, Claire Surr, Darren Hill, Iain Lawrie, Penny Wright, Liz Jones, Phil Gleeson.
Research Assistant at Leeds Beckett University. Undergraduate degree at Leeds Trinity University BSc Forensic Psychology. Currently undertaking a MSc at University of Leeds in Health Psychology.