“The challenge of joining all the pieces together” – Nurses’ experience of palliative care for older people with advanced dementia living in residential aged care units

Abstract

Aims and objectives To describe nurses’ experiences of palliative care for older people with advanced dementia living in residential aged care units. Background Dementia is a global health problem and the number of older people with dementia who need palliative care is increasing. Previous research has revealed that care for older people with dementia in the final stage of life is usually complex. However, little is known about how nurses experience palliative care for older people with advanced dementia living in residential aged care units. Method Nine individual, semi‐structured face‐to‐face interviews with nurses working in residential aged care units for older people with advanced dementia in palliative care in Western Sweden were analysed using qualitative inductive content analysis. The COREQ checklist was followed. Results The nurses considered that palliative care for older people with advanced dementia is a complex and challenging form of care. In particular, they identified three challenges that must be met: developing specialised knowledge and skills, developing teamwork as a working method and creating a caring relationship. Conclusions The results of our analysis indicate that if nurses are aware of and understand that the challenges are essential for “joining all the pieces together,” the palliative care for older people with advanced dementia may become a positive experience for nurses and may increase their sense of satisfaction and security in their professional role. Relevance to clinical practice For the palliative care to be successful, the nurses need to “join all the pieces together,” that is succeed in developing specialised knowledge and skills, developing teamwork as a working method and creating a caring relationship to establish a person‐centred care with the older person with advanced dementia and with his or her relatives.

Palliative Care in Older People with Multimorbidities: A Scoping Review on the Palliative Care Needs of Patients, Carers, and Health Professionals

“…Some studies were performed in two or more countries: Belgium, Netherlands, UK, Germany, Hungary [ 67 ]: North America, Australia [ 68 ], UK, Ireland, USA [ 69 ], USA, UK, Australia, Canada, Belgium, Germany, Hong Kong, Japan, Malaysia, Singapore [ 70 ], USA, UK, Sweden, Netherlands, Spain, Canada, Ireland, Australia, New Zealand [ 71 ], South Africa, Kenya, South Korea, United States, Canada, UK, Belgium, Finland, Poland [ 72 ], Australia, New Zealand, UK [ 73 ], Canada, USA, UK [ 74 ]. The rest were in Belgium [ 75 , 76 ], Sweden [ 77 , 78 , 79 ], Brazil [ 80 ], China [ 81 ], Switzerland [ 82 ], the Netherlands [ 83 , 84 ], Norway [ 85 ], New Zealand [ 86 ], Denmark [ 87 ] and Hong Kong [ 88 ]. There were six studies with no information on the country/city where the research was performed [ 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 ].…”

“…In other studies, professionals highlighted that patients suffering from non-cancer diseases often receive inadequate care, with poor communication between the different services that care for them, and also shared that there are fewer specific services for these patients compared to for cancer patients [ 61 , 83 ]. A lack of staff to provide sufficient care to patients, resulting in little time to properly address PC needs, was highlighted by some studies [ 48 , 79 , 80 , 81 ].…”

“…Some studies also pointed out that professionals need more time and continuity in the attention given to their patients, having time to talk calmly with patients and their families about PC decisions and needs [ 31 , 62 , 81 , 82 , 87 ]. The pressure of having less time was indicated as causing a feeling of not being able to talk with or attend to patients in a comprehensive way [ 62 , 82 ], and lack of continuity was pointed out as a major threat to PC attention, especially for people with severe dementia [ 32 , 79 , 85 ]. Two studies remarked on the need to take into consideration the biography of each patient, and reported that practitioners considered that they only overviewed fragments of care among older patients, which makes the provision of individualized care adapted to patients’ needs difficult [ 52 , 61 ].…”

“…(b) Comprehensive and continuous care in PC Professionals considered that a holistic approach to patient care is crucial, starting when curative treatment is no longer realistic, rather than focusing only on physical symptoms [16,21,76,79,88]. The necessity of going beyond the management of pain was underlined, as patients' and their relatives' non-physical needs, such as spiritual and emotional needs, were considered to need further support [16,76].…”

Nurses’ Experience of Nursing Workload-Related Issues during Caring Patients with Dementia: A Qualitative Meta-Synthesis

“…Creating a good relationship with dementia patients’ family members is a prerequisite of high-quality care [ 44 ], and nurses need to enable the family members’ involvement in their patients’ lives, as patients have a long-lasting relationship with their family. As dementia patients have limited communication skills due to their symptoms, creating a good relationship with family members is also important to obtain information that would otherwise be unavailable [ 45 ]. The mediator role played by nurses has not been included in estimating their workloads.…”