Dying With Dementia: Caregiver Observations of Their Family Members’ Physical Decline and Behavioral or Psychological Changes During Their Last Days

2020 ◽  
pp. 003022282090668
Author(s):  
Cynthia A. Hovland ◽  
Christopher A. Mallett
Keyword(s):  
Family Caregivers ◽  
Health Care Professionals ◽  
Older Persons ◽  
Qualitative Interviews ◽  
Family Members ◽  
Psychological Changes ◽  
Physical Decline ◽  
Dementia Caregiver ◽  
Self Sufficiency ◽  
Getting Lost

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers’ perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members’ last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

When Death With Dementia Is “A Memory Seared in My Brain”: Caregivers’ Recommendations to Health Care Professionals

2019 ◽  
Vol 39 (11) ◽  
pp. 1195-1202
Author(s):  
Cynthia Hovland
Keyword(s):  
Health Care ◽  
Content Analysis ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Life Experience ◽  
Qualitative Content Analysis ◽  
Qualitative Interviews ◽  
Family Members ◽  
Professional Health

The purpose of this study is to determine family caregivers’ recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals’ roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.

Family caregivers for older persons with dementia offer recommendations to current caregivers: A qualitative investigation

2021 ◽  
pp. 174498712110416
Author(s):  
Cynthia A Hovland ◽  
Christopher A Mallett
Keyword(s):  
Older Adults ◽  
Content Analysis ◽  
Data Analysis ◽  
Family Caregivers ◽  
Older Persons ◽  
Qualitative Interviews ◽  
Family Members ◽  
Qualitative Investigation ◽  
Older Person ◽  
Person With Dementia

Background and aims Family members who care for older adults with dementia encounter significant difficulties across many domains. There is limited research in this area; thus, the aim here is to share the actual experiences of 30 family caregivers to other family caregivers and to show how these experiences can provide help and recommendations. Methods This qualitative study of 30 family caregivers of family members aged 65 and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period for data collection and content analysis to understand the data. The study asked what they learned and what subsequent recommendations these caregivers had for other family caregivers taking care of an older person with dementia. Results Four primary themes emerged from the content data analysis and included the following: (1) “do not do it alone”; (2) patience, love, and kindness; (3) “ first of all, take care of yourself”; and (4) “ get educated.” Conclusions This study is unique in asking directly of family caregivers of older persons who died of dementia what they learned and what they want to share and recommend to ongoing and future family caregivers.

Visualizing social support in home pediatric palliative care using network maps

2019 ◽  
Vol 34 (3) ◽  
pp. 378-386 ◽  
Author(s):  
Daniela Lindemann ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
Maria Wasner
Keyword(s):  
Social Support ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
Oral Feedback ◽  
Digital Network ◽  
The Social ◽  
Palliative Care Teams

Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers’ support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

scholarly journals Identifying Required Skills to Enhance Family Caregiver Competency in Caring for Individuals With Spinal Cord Injury Living in the Community

2019 ◽  
Vol 25 (4) ◽  
pp. 290-302
Author(s):  
Gaya Jeyathevan ◽  
Jill I. Cameron ◽  
B. Catharine Craven ◽  
Susan B. Jaglal
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Caregivers ◽  
Social Services ◽  
Health Care Professionals ◽  
Family Members ◽  
Real Life ◽  
Well Being ◽  
Psychosocial Needs ◽  
Cord Injury

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI ( n= 19) and their family members ( n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

scholarly journals Conceptions of Healthy Aging Held by Relatives of Older Persons in Isan-Thai Culture: A Phenomenographic Study

2018 ◽  
Vol 2018 ◽  
pp. 1-9 ◽  
Author(s):  
Pornpun Manasatchakun ◽  
Åsa Roxberg ◽  
Margareta Asp
Keyword(s):  
Older Persons ◽  
Healthy Aging ◽  
Family Members ◽  
Northeast Thailand ◽  
Phenomenographic Study ◽  
Family Nurses ◽  
Thai Culture

In Thailand, family nurses are expected to provide support for older persons and their family members to promote healthy aging. Family bonds are strong, and relatives are expected to take care of their older family members. However, there is limited research on how older persons’ family members perceive healthy aging. This study aimed to describe the conceptions of healthy aging held by the children and grandchildren of older persons in northeast Thailand. In a phenomenographic study, 14 interviews were performed to qualitatively analyze different conceptions of healthy aging. Four descriptive categories emerged: being independent, not being afflicted by diseases or illnesses, being a giver and a receiver, and being wise. The conceptions of healthy aging entail both autonomy and interdependence. The relative’s perspective needs to be considered when policies relating to healthy aging are implemented in the community and when family nurses provide support to families to promote healthy aging.

scholarly journals Psychological Consequences of the Delay in the Silent Mentor Programme During the COVID-19 Pandemic: Perspectives From Family Members of Silent Mentors

2021 ◽  
pp. 003022282110009
Author(s):  
Li Ping Wong ◽  
Sik Loo Tan ◽  
Haridah Alias ◽  
Thiam Eng Sia ◽  
Aik Saw
Keyword(s):  
Mental Health ◽  
Qualitative Interviews ◽  
Psychological Impact ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Functional Health ◽  
Psychological Consequences ◽  
Negative Effect ◽  
Health And Well Being

The COVID-19 pandemic has put a hold on the Silent Mentor Programme (SMP); this pause has not only caused unprecedented challenges for the delivery of medical education but has forced changes in the programme ceremony sessions. We aimed to describe the psychological impact and experiences of family members of silent mentors during the COVID-19 pandemic using qualitative interviews. Many expressed feelings of remorse and unrest about the unprecedented delay of the SMP. The delay increased negative emotions particularly among some elderly family members; however, there was no prominent negative effect on their functional health and well-being. Several participants relayed the belief that the soul cannot rest until the body receives a proper burial while some worried about the deterioration of the physical condition of the mentors. In conclusion, findings provide insights into the importance of not overlooking the mental health implications of delaying the SMP in future outbreaks or crises.

scholarly journals Attitudes Toward Sexual Behaviors in Long-Term Care: Development of an Assessment Tool

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 602-603
Author(s):  
Rachael Spalding ◽  
Emma Katz ◽  
Barry Edelstein
Keyword(s):  
Sexual Behaviors ◽  
Long Term Care ◽  
Assessment Tool ◽  
Qualitative Interviews ◽  
Family Members ◽  
Community Dwelling ◽  
Term Care ◽  
Care Development

Abstract Most older adults living in long-term care settings (LTCs) indicate that expressing their sexuality is important to them (Doll, 2013). Little is known about the general public’s attitudes towards sexual behaviors in LTCs. Attitudes of LTC residents’ family members are particularly important, as family members are most likely to visit residents and to care about their quality of life. Family members’ attitudes could in turn inform facility policies and management. We will present preliminary data from a series of qualitative interviews with community-dwelling adults regarding their attitudes. We will discuss how these data are being used to inform current work on a measure of attitudes toward sexual behavior in LTCs.

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