Understanding the care and support needs of nursing home residents with dementia and comorbid cancer

Background 

Due to an ageing population, and the increasing prevalence of older adults living with comorbidities, a growing proportion of people are living with dementia and comorbid cancer (DCC) in nursing homes (NH). People with DCC are diagnosed at a later stage, receive less treatment, and have poorer survival. Very few studies, and none in the United Kingdom, have examined the care and support needs of people with DCC living in nursing homes (NH). 

Aims 

The aims of this thesis are: (1) what are the care and support needs of people with DCC living in NHs; (2) what are the barriers and facilitators to high-quality, person-centred care (PCC) for this resident group?; and (3) what are the target areas and outcomes for a future intervention to support and improve PCC for this group.

Methods 

Across five NHs I conducted: (1) interviews with 14 staff members and healthcare professionals, and 5 family caregivers; and (2) ethnographic observations (a) following the care experiences of 7 residents with DCC (approx. 90-hours over 10-months), and (b) broader NH observations (approx. 170-hours over 10-months). This research draws on aspects of the Cumulative Complexity Model (CCM) with an in-depth exploration of the Burden of Treatment (BOT) and Illness (BOI) placed on family caregivers, NH staff and residents with DCC. 

Results 

Four main themes were identified: (1) Complexity of decision-making– a collaboration of views from a resident’s care triad was crucial to determine the most appropriate care outcome for a resident; (2) Obstacles to accessing oncology services– generally, gaining an early cancer diagnosis is deemed both desirable and best practice in terms of its management. For most residents with severe dementia, physical and well-being factors showed receiving a diagnosis or treatment was not the most appropriate care route for this population; (3) Balancing delivery of dementia and cancer care – due to staffs’ incomplete knowledge about a resident’s cancer and how to manage this, their condition was often overlooked in care documentation and practice. Thus, a resident’s cancer was overshadowed by their dementia; (4) Consequences of dementia-orientated care for residents with cancer – if dementia-related care needs were prioritised, there was a higher risk of cancer symptoms being overlooked, inefficiently managed, or misattributed to a resident’s dementia. 

Conclusion 

Care and support inequalities are an identified risk for people with DCC in NHs for whom attending hospital to gain a formal cancer diagnosis is not feasible or in their best interests. This includes the risk of diagnostic overshadowing and heightened cancer-related symptoms that could lead to an emergency presentation. Recommendations for practice have included establishing ceilings of care with a resident’s care triad, outlining the logistics of accessing oncology services at the point of referral for residents that require hospital support, implementing areas in care plans to include a suspected diagnosis of cancer and related needs, utilise pain assessment tools to support cancer pain management, establish communication pathways with specialist palliative care teams and identify gaps in knowledge for nursing home staff to provide appropriate symptom management.