Whose Neglect? Exploring Patient and Caregiver Boundaries in Advanced Dementia

2021 ◽  
Vol 22 (1) ◽  
pp. 71-72
Author(s):  
Anita J. Tarzian
Keyword(s):  
Advanced Dementia

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

Abstract Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO (CRD42020183649).

scholarly journals Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries

Geriatrics ◽  
2021 ◽  
Vol 6 (2) ◽  
pp. 44
Author(s):  
Shelley A. Sternberg ◽  
Shiri Shinan-Altman ◽  
Ladislav Volicer ◽  
David J. Casarett ◽  
Jenny T. van der Steen
Keyword(s):  
Palliative Care ◽  
The Netherlands ◽  
Hospice Care ◽  
The United States ◽  
Artificial Nutrition ◽  
Advanced Dementia ◽  
Case Scenario ◽  
Artificial Nutrition And Hydration ◽  
Positive Elements ◽  
The Us

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), the Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and the Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in the Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in the Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in the Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

scholarly journals “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jessica A. L. Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J. Poulos ◽  
Josephine M. Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Aged Care ◽  
Care Staff ◽  
Care Homes ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Front Line ◽  
Care Managers

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. 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. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). 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. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

The Role of Everyday Sounds in Advanced Dementia Care

2020 ◽  
Author(s):  
Maarten Houben ◽  
Rens Brankaert ◽  
Saskia Bakker ◽  
Gail Kenning ◽  
Inge Bongers ◽  
...  
Keyword(s):  
Dementia Care ◽  
Advanced Dementia
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