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

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

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 thirteen nurses from twelve 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 in 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.

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

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

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 thirteen nurses from twelve 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 in 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.

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

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Emma Lundin ◽  
Tove E. Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

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.

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

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

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 thirteen nurses from twelve 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 in 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.

scholarly journals The Impact of Nursing Homes Staff Education on End-of-Life Care in Residents With Advanced Dementia: A Quality Improvement Study

2019 ◽  
Vol 57 (1) ◽  
pp. 93-99 ◽  
Author(s):  
Paola Di Giulio ◽  
Silvia Finetti ◽  
Fabrizio Giunco ◽  
Ines Basso ◽  
Debora Rosa ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Staff Education ◽  
The Impact

scholarly journals “A Good Death But There Was All This Tension Around” - Perspectives of Residential Managers on the Experiences and Challenges of Delivering end of Life Care for People Living with Dementia.

2020 ◽  
Author(s):  
Jessica Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J Poulos ◽  
Josephine M Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Symptom Burden ◽  
Aged Care ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Optimal Care ◽  
Family Demands

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex because there is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia from the coalface to the broader policy context. Methods Focus groups and semi-structured interviews were conducted with 20 residential managers from 11 aged care homes in Australia. Transcripts were analysed using thematic analysis. Results Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding.

End-of-life care in nursing home settings: Do race or age matter?

2008 ◽  
Vol 6 (1) ◽  
pp. 21-27 ◽  
Author(s):  
Kimberly S. Reynolds ◽  
Laura C. Hanson ◽  
Martha Henderson ◽  
Karen E. Steinhauser
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

ABSTRACTObjective:One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.Methods:We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.Results:White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.Significance of results:To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

scholarly journals Challenges when caring for end-of-life patients with advanced dementia and pain: A qualitative study in Swedish nursing homes

2019 ◽  
Author(s):  
Tove Godskesen ◽  
Emma Lundin
Keyword(s):  
Health Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Care Staff ◽  
Health Care Staff ◽  
Common Symptom ◽  
Advanced Dementia ◽  
Good Communication ◽  
Individual Interviews

Abstract Background Of Swedish people with advanced dementia, the majority dies in nursing homes. Pain is a common symptom in patients at the end-of-life, and patients with advanced dementia often experience suboptimal and inadequate pain management. Compared to cancer patients, they receive fewer palliative care interventions. Although being largely responsible for the care of these patients, few studies address the experiences of registered nurses. Therefore, this study aimed to describe nurses' experiences of caring for end-of-life patients with advanced dementia and pain. Methods This study had a descriptive and explorative design. Individual interviews with thirteen nurses from twelve nursing homes in Sweden were qualitative and semi-structured. The content was analysed through inductive content analysis. Results Nurses described communicative, relational and organisational challenges. A major issue was difficulties to communicate with the patient, resulting in uncertain pain assessments. Other difficulties were to separate pain from anxiety, to balance benefits and risks in morphine administration, and to create good relationships with health care personnel and relatives. Relatives could greatly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Facilitators of good pain management were good communication and relations with health care staff and relatives, having extensive professional experience, and knowing the patient.Conclusions This study highlights the need for nursing homes to employ specialist-trained nurses, who have the appropriate knowledge and skills to deal with the challenges in caring for end-of-life patients with dementia and pain. Additionally, there should be resources and strategies available for providing information to patients’ family members and for involving them in the decisional process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administrative morphine or not.

The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review

2012 ◽  
Vol 11 (2) ◽  
pp. 155-168 ◽  
Author(s):  
Shelley C. Peacock
Keyword(s):  
Literature Review ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Life Care ◽  
Advanced Dementia ◽  
Symptoms Of Depression ◽  
People With Dementia ◽  
End Stage

AbstractThe number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

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