End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes

Abstract

Background Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with 13 nurses from 12 nursing homes in Sweden. The results were analysed using thematic content analysis. Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

Are nurse`s needs assessment methods robust enough to recognise palliative care needs in people with dementia? A scoping review

“…However, there was a wide range of research methods and data collection approaches used, ranging from action research approaches, to interviews, to ethnographic accounts, questionnaires, and extensive chart reviews and audits. The year of publication ranged from 2001 [ 72 ] to 2021 [ 66 , 93 ], with most studies having been published between 2011 and 2021. However, the aims amongst the studies remained within similar scope over the years (Table 1 ).…”

“…IF: 1.987 • In order to recognise, assess, and manage pain in People with dementia in the acute hospital setting, various information sources and individuals at different times and in different places need to be present • Four over-arching themes identified during interviews to understand how pain in People with dementia was assessed: communication pain with dementia, carer-clinician communications, trials with therapy, putting a picture together End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes Lundin E. and Godskesen T.E. 2021 Sweden [ 93 ] To describe the experiences of pain management of nurses in caring for people with advanced dementia and pain at the end of life Nurses: n = 13 (Registered nurses = 11; nurses = 2) BMC Nursing. IF: 2.59 • Challenges in terms of assessing and relieving pain (communication) such as uncertainties when to assess pain • The influence of relatives (relational), and time constraints due to various reasons (organisational) were described by nurses caring for People with dementia Complexities of pain assessment and management in hospitalised older people: A qualitative observation and interview study Manias E. 2012 Australia [ 94 ] To examine how pain was assessed and managed in older patients who were admitted to geriatric evaluation and management units Sample Geriatric patients: n = 285 including n = 15 patients with cognitive impairment; Registered nurses: n = 34 International Journal of Nursing Science.…”

“…Most studies stemmed from Europe [ 62 , 66 – 68 , 70 – 73 , 77 , 81 – 86 , 88 – 90 , 92 , 93 , 97 ] and were conducted in nursing homes [ 61 – 63 , 65 , 68 , 71 , 72 , 74 – 78 , 80 – 83 , 85 – 88 , 91 , 93 , 95 , 96 ] (Table 2 ). However, the sample, as illustrated in Table 2 , was diverse in terms of continent and settings in which the studies were conducted.…”

Association Between Pain with Disability in the Elderly with Dementia

“…The needs of the elderly as one of the vulnerable groups in all dimensions and areas have not been specially studied, and it is necessary to pay more attention to this group of people (13). Elderly people with dementia experience many difficulties, including pain (14), disability (15), and falls (16). Pain is one of the problems of the elderly, which has many negative effects on the living conditions of this age group, and the prevalence of pain in the elderly with dementia has been significant.…”

Leadership challenges and strategies to dementia care in Chinese faith‐based nursing homes: A qualitative study

“…Although most older adults with dementia prefer to live in the community, as their condition deteriorates, many transits to nursing homes (Lundin & Godskesen, 2021;Wang et al, 2021). For example, in Western countries (e.g., Sweden and the United States) most older adults with dementia live in nursing homes (Alzheimer's Association, 2020; Lundin & Godskesen, 2021). In Asia, traditionally, due to familism and filial piety, families have been reluctant towards nursing home care (Jang et al, 2019;Sun et al, 2021).…”