• To be aware of the challenges in care that can arise when a person living with dementia develops cancer
• To recognise the importance of cancer screening and assessment in people living with dementia
• To consider how the treatment and care of people living with dementia and comorbid cancer could be improved
Data regarding the prevalence of dementia and the prevalence of cancer suggest that a relatively large number of older people living with dementia may also have unsuspected comorbid cancer. Research into dementia and comorbid cancer is limited. The existing literature shows that people living with dementia have much lower cancer survival rates than people who do not have dementia, perhaps due to advanced age and cancer being diagnosed at a late stage or not at all. In people with dementia, investigating and managing cancer is complicated by cognitive impairment, atypical presentation, communication difficulties and potential behavioural issues – all of which may deter healthcare professionals from conducting patient assessments and screening tests. In this article, the authors use a case study to illustrate the challenges that can arise when a person living with dementia develops cancer, particularly in relation to diagnosis, pain assessment, decision-making and carer involvement.
Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1836Peer review
This article has been subject to external double-blind peer review and checked for plagiarism using automated softwareCorrespondence
de Vries K, Chaâbane F, Harrison Dening K (2023) Dementia and comorbid cancer: challenges and implications for nursing practice. Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1836
Published online: 21 March 2023
cancer - cancer screening - clinical - comorbidity - dementia - diagnosis - neurology - nursing care - older people - pain - pain assessment - professional
As a result of increases in longevity and advances in the management of long-term conditions, people are living longer and a growing number of older people are living with several comorbid conditions. Dementia and cancer are likely to make substantial contributions to the burden of comorbidity in older people. An estimated 944,000 people in the UK live with dementia, about 593,200 of whom have severe dementia (Wittenberg et al 2019), and modelling suggests that by 2040 there will be 1.2 million people in the UK living with dementia (Livingston et al 2020). Meanwhile, Cancer Research UK (2023) reported that each year more than one third (36%) of all cancer cases in the UK are diagnosed in people aged 75 years and over. Earlier detection and more effective treatments have resulted in cancer increasingly becoming a long-term condition, and most older people diagnosed with cancer can be expected to live five years beyond their cancer diagnosis (Rowland and Bellizzi 2014).
These prevalence data suggest that a relatively large number of older people living with dementia may have undetected comorbid cancer. However, research on older people living with dementia and comorbid cancer is limited. Little is known about their disease trajectory, about the effects of dementia on their cancer treatment and outcomes, and about the experiences of their family and informal carers. Furthermore, there are no guidelines on how to manage comorbid cancer in people living with dementia, as well as a lack of autopsy data that could inform research and practice.
For nurses who support people living with dementia and their families and informal carers, the presence of comorbid cancer poses significant challenges. This article uses a case study to illustrate the challenges regarding diagnosis, pain assessment, decision-making and carer involvement, and discusses them in relation to the literature. The case study is based on a combination of the experiences and circumstances of several patients that the authors have encountered in their practice.
• It is likely that many older people living with dementia have comorbid cancer, but this may remain undetected and untreated due to suboptimal screening and assessment
• Investigating and managing cancer in people with dementia can be complicated by cognitive impairment, atypical presentation, communication difficulties and potential behavioural issues
• Comprehensive history taking, appropriate screening tests and the use of dementia-specific pain assessment tools are essential so that people living with dementia who have comorbid cancer receive adequate care and treatment
• Cancer care in people living with dementia is complex and requires collaborative decision-making from a range of specialists, as well as the involvement of family and informal carers
Peter was diagnosed with Alzheimer’s disease at the age of 65 years. He lived with his wife Jan; their two daughters having left the family home a few years earlier. By the age of 69 years, he started to experience abdominal pain as well as increasing distress and agitation, which meant that he could no longer be left alone at home. He was supported by local mental health services, which helped develop a programme of support that included assistance for Jan as a carer and arranging a befriender for Peter.
One weekend, Peter developed severe abdominal pain and Jan called the GP, who visited them at home. Peter did not let the GP undertake a physical examination and the GP, suspecting constipation, recommended treatment with enemas. A few hours later Jan called an ambulance because Peter appeared to be highly distressed, clutching his abdomen and retching when fluid or foods were offered. At the general hospital where he was admitted, Peter did not cooperate with physical examinations but did let staff take a blood sample, which revealed no abnormalities, and undertake an abdominal X-ray, which showed faecal impaction in the colon. He was discharged home with more enemas to continue to clear his bowel.
Over a period of three or four months, Jan observed how Peter writhed about as if ‘in agony’, retching when drinking water and pushing food and fluids away. He would clutch his abdomen and say things like ‘I’m dying, you’re trying to poison me’. He steadily lost weight, broke out in a sweat most nights and was highly tense and irritable. The GP prescribed sedatives to address his symptoms, with no apparent effect aside from making Peter drowsy, distressed and agitated. For a period of six weeks, Peter experienced frequent bouts of agitation and apparent pain, with repeated admissions to the emergency department and discharges home.
At the hospital, Jan was told that no invasive investigations could be undertaken because of Peter’s dementia and the doctors and nurses made it clear that they thought Peter’s behaviours were caused by agitation as a symptom of dementia. After another admission, having lost almost three stone in weight within three months, Peter died in hospital. A post-mortem showed that he had advanced colorectal cancer. Jan felt that Peter’s dementia had overshadowed his undetected cancer and had prevented him from receiving adequate supportive care and pain management.
Dementia is a progressive condition affecting people’s memory, mood and movement, as well as their language and understanding (Prince et al 2016). In the advanced stages of the disease, individuals experience severe cognitive and physical impairment and are likely to be unable to communicate verbally, while they may also develop urinary and/or faecal incontinence and require extensive support for activities of daily living (Sampson and Harrison Dening 2021).
There is little research on the presentation, assessment and treatment of cancer in people living with dementia. Several reviews have shown that people living with dementia have much lower cancer survival rates than people who do not have dementia (Drageset et al 2014, Hopkinson et al 2016, McWilliams et al 2018a, Caba et al 2021, Ashley et al 2022). The reasons for this may include advanced age, cancer being diagnosed at a late stage and cancer diagnosis being missed altogether, even after controlling for factors such as age, tumour type and tumour stage (Robb et al 2010, Caba et al 2021, Ashley et al 2022). A missed cancer diagnosis is a significant cause of adverse events in any patient (Singh et al 2007, Tørring et al 2013, Aaronson et al 2019). Aaronson et al (2019) found that missed cancer diagnoses – most commonly of lung, colorectal, prostate and breast cancer – represented 46% of diagnostic errors made in primary care.
Gupta and Lamont (2004) found that, in a cohort of around 17,500 patients who were newly diagnosed with colon cancer, the prevalence of dementia was almost 7%. After adjusting for possible confounders, the researchers concluded that people living with dementia were twice as likely than people who do not have dementia to have colon cancer diagnosed after their death (Gupta and Lamont 2004). People living with dementia who have colon cancer have also been shown to be less likely to undergo surgery or chemotherapy than people with colon cancer who do not have dementia (Gupta and Lamont 2004, Baillargeon et al 2011, Fleming et al 2014). Similar findings have been described in patients with breast cancer (Gorin et al 2005, Kimmick et al 2014), while Attner et al (2010) concluded that cancer is likely to be underdiagnosed in people living with dementia. Considering the different tumour types identified in the literature on cancer and dementia, patients may present with a wide variety of signs and symptoms. Atypical signs and symptoms may mask the presence of comorbid cancer in people living with dementia.
People living with dementia are screened for cancer less often than people who do not have dementia (Kuwata et al 2021). The few studies on cancer screening in people living with dementia have shown that a diagnosis of dementia is negatively associated with routine cancer screening (Smyth 2009, Walter et al 2009, Mehta et al 2010, Torke et al 2013, Ashley et al 2022). Overall, in people living with dementia, cancer is diagnosed at a later stage than in people who do not have dementia (Tammemagi et al 2003, Gupta and Lamont 2004, Gorin et al 2005, Bradley et al 2008, Raji et al 2008, Hopkinson et al 2016, Caba et al 2021, Abdel-Razeq et al 2022, Ashley et al 2022). Furthermore, effective treatment and monitoring of comorbid cancer is often compromised by diagnostic overshadowing, whereby signs and symptoms indicative of pain due to a physical health condition – for example cancer – are misinterpreted as behavioural and psychological symptoms of dementia (Shefer et al 2014, Dillane and Doody 2019).
In Peter’s case, there were several points at which healthcare professionals could have considered whether he had an underlying condition. When Peter first presented with severe abdominal pain, taking a comprehensive patient history would have revealed that he had a family history of colorectal cancer – his father and one of his uncles had died in their late 50s from this disease. However, Peter’s family history was not considered at any stage. The healthcare professionals involved in Peter’s case assumed that his agitation was caused by dementia and that his pain was caused by constipation, and they treated these issues with sedatives and enemas. Taking a family history is a crucial part of patient assessment and care (Guttmacher et al 2004, Ginsburg et al 2019, Bylstra et al 2021).
After finding out about Peter’s family history of colorectal cancer, healthcare professionals could have undertaken screening tests. A colonoscopy, which is the preferred screening test where there is a family history of colorectal cancer (Henrikson et al 2015), may not have been feasible or appropriate in Peter’s case. However, a faecal immunochemical test – a non-invasive investigation that involves taking and analysing a sample of faeces – could have been undertaken. The use of this test is feasible in people with dementia, as demonstrated by Law et al’s (2018) meta-analysis, which found that the rates of screening for colorectal cancer using the faecal immunochemical test were not significantly lower in people with cognitive impairment or dementia than in people without cognitive impairment or dementia.
Assessing pain in people living with dementia is challenging given the presence of cognitive impairment, people’s difficulties in explaining their pain and potential behavioural issues such as verbal or physical aggression (Achterberg et al 2013, Dooley et al 2015). Diagnostic overshadowing can also occur (Dillane and Doody 2019).
Research has shown that pain in people living with dementia is under-reported, under-detected and undertreated (Monroe et al 2012, 2013, Achterberg et al 2013, Corbett et al 2014, Hadjistavropoulos et al 2014, Lichtner et al 2014, 2016, Husebo et al 2016). It has also identified that, in people living with dementia and cancer, reported pain and the administration of analgesics decrease as the severity of dementia increases (Iritani et al 2011, Monroe et al 2012, 2013). In a systematic review of cancer-related symptoms among nursing home residents with and without dementia, Drageset et al (2014) found a high prevalence of pain in both groups, but reduced prescribing for pain in those with severe dementia. The reviewers asserted that caring for nursing home residents diagnosed with cancer is challenging and requires expertise in dementia care, cancer care and palliative care (Drageset et al 2014).
Peter showed obvious signs of pain and one of his prevalent behaviours – clutching his abdomen – gave a clear indication of the site of his pain. Because doctors and nurses believed that Peter’s behaviour was caused by agitation as a symptom of dementia, they focused on constipation as the cause of his pain. At no stage of Peter’s encounters with healthcare professionals in primary care, emergency care and acute hospital settings was a pain assessment tool used, despite several pain assessment tools specific to people living with dementia being available (Box 1).
• Abbey Pain Scale (Abbey et al 2004)
• Assessment of Discomfort in Dementia (ADD) protocol (Kovach et al 2001)
• Disability Distress Assessment Tool (DisDAT) (Regnard et al 2007)
• Doloplus-2 pain scale (Rostad et al 2017)
• Non-Communicative Patient’s Pain Assessment Instrument (NOPPAIN) (Snow et al 2004)
• Pain Assessment in Advanced Dementia (PAINAD) (Warden et al 2003)
• Pain Assessment in Impaired Cognition (PAIC15) (Kunz et al 2019)
In their systematic review of pain assessment for people with dementia, Lichtner et al (2014) identified 28 tools that could be used in clinical practice; however, the reviewers could not recommend a specific tool due to the lack of thorough evidence on the reliability, validity, feasibility and clinical efficacy. Hadjistavropoulos et al (2014) emphasised that the ideal method for assessing the subjective experience of pain is to ask the person about it, which can be done even in people with cognitive impairment if communication is adapted accordingly.
Peter’s case illustrates the challenges for healthcare professionals – particularly those working in oncology – in understanding the effects of dementia on how people present when they have cancer and the implications for screening and treatment (McWilliams et al 2018b). Making decisions regarding the care and treatment of people living with dementia is complex and the benefits and risks specific to that population need to be considered (Hirschman et al 2004, Moye and Marson 2007). Cancer care in people living with dementia is equally complex and requires collaborative decision-making from a range of specialists (Guthrie et al 2012), as well as the involvement of family and informal carers (Pu et al 2023). Informal carers should have a central role in decision-making at all stages, but this does not appear to have been the case for Peter’s wife Jan.
Smyth (2009) found that healthcare professionals’ recommendations influenced screening practices in older women living with dementia who had developed breast cancer. Family and informal carers’ views regarding screening and treatment varied widely, except when the person had severe dementia, in which case comfort care was consistently preferred to active cancer screening and treatment (Smyth 2009). Similarly, Torke et al (2013) conducted focus groups with 32 carers of people with comorbid dementia and cancer, finding that as dementia progressed, many carers wanted to stop cancer screening tests and treatment and were relieved when healthcare professionals mentioned that option. Carers were open to the idea of stopping tests and treatment to focus on quality of life (Torke et al 2013). According to Kuwata et al (2021), when making decisions about cancer screening in people living with dementia four main factors should guide decision-making: the person’s prognosis, the person’s cognitive abilities, possible behavioural barriers to investigations, and the goals of care.
People with dementia and comorbid cancer rely on supportive social networks to access treatment and care, so it is vital to consider how those with no such networks can be appropriately cared for in specialist services (Griffiths et al 2020, Surr et al 2020).
People living with dementia are likely to have comorbid conditions such as cancer, but screening and assessment are often suboptimal, so many of these comorbid conditions remain undetected and untreated. Nurses in various settings have a central role in the assessment and management of people living with dementia and comorbid cancer. Comprehensive history taking, appropriate screening tests and the use of dementia-specific pain assessment tools are essential so that people living with dementia who have comorbid cancer receive adequate care and treatment, including supportive care and pain relief. In people with these comorbid conditions, the benefits of screening and treatment need to be weighed against the risks and the goals of care need to be determined, while recognising the crucial role of family and informal carers in decision-making.
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