Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada

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Abstract

Background

Residents living and dying in long-term care (LTC) homes represent one of society’s most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia.

Methods

This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family.

Results

The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants’ pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process.

Conclusions

These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.

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Most cited references 43

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Caring for a relative with dementia: family caregiver burden.

P Sourtzi, Haritini Tsangari, Evridiki Papastavrou … (2007)

This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalization. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Center for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68.02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.

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Dying with advanced dementia in the nursing home.

Susan Mitchell, Dan K Kiely, Mary Beth Hamel (2004)

Nursing homes are important providers of end-of-life care to persons with advanced dementia. We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups. At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%). Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.

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End-of-life care and the effects of bereavement on family caregivers of persons with dementia.

Richard Schulz, Aaron B Mendelsohn, William E Haley … (2003)

Although family caregiving has been intensively studied in the past decade, little attention has been paid to the impact of end-of-life care on caregivers who are family members of persons with dementia or to the caregivers' responses to the death of the patient. Using standardized assessment instruments and structured questions, we assessed the type and intensity of care provided by 217 family caregivers to persons with dementia during the year before the patient's death and assessed the caregivers' responses to the death. Half the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living and instrumental activities of daily living. More than half the caregivers reported that they felt they were "on duty" 24 hours a day, that the patient had frequent pain, and that they had had to end or reduce employment owing to the demands of caregiving. Caregivers exhibited high levels of depressive symptoms while providing care to the relative with dementia, but they showed remarkable resilience after the death. Within three months of the death, caregivers had clinically significant declines in the level of depressive symptoms, and within one year the levels of symptoms were substantially lower than levels reported while they were acting as caregivers. Seventy-two percent of caregivers reported that the death was a relief to them, and more than 90 percent reported belief that it was a relief to the patient. End-of-life care for patients with dementia was extremely demanding of family caregivers. Intervention and support services were needed most before the patient's death. When death was preceded by a protracted and stressful period of caregiving, caregivers reported considerable relief at the death itself. Copyright 2003 Massachusetts Medical Society

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Author and article information

Contributors

Sharon Kaasalainen:

ORCID: http://orcid.org/0000-0003-2175-6037

kaasal@mcmaster.ca

Paulette V. Hunter: phunter@stmcollege.ca

Vanina Dal Bello-Haas: vdalbel@mcmaster.ca

Lisa Dolovich: ldolovic@mcmaster.ca

Katherine Froggatt: k.froggatt@lancaster.ac.uk

Thomas Hadjistavropoulos: thomas.hadjistavropoulos@uregina.ca

Maureen Markle-Reid:

ORCID: https://orcid.org/0000-0002-4019-7077

mreid@mcmaster.ca

Jenny Ploeg:

ORCID: https://orcid.org/0000-0001-8168-8449

ploegj@mcmaster.ca

Joyce Simard: joycesimard@earthlink.net

Lehana Thabane: thabanl@mcmaster.ca

Ladislav Volicer: lvolicer@usf.edu

Journal

Journal ID (nlm-ta): Pilot Feasibility Stud

Journal ID (iso-abbrev): Pilot Feasibility Stud

Title: Pilot and Feasibility Studies

Publisher: BioMed Central (London )

ISSN (Electronic): 2055-5784

Publication date (Electronic): 2 March 2020

Publication date PMC-release: 2 March 2020

Publication date Collection: 2020

Volume: 6

Electronic Location Identifier: 34

Affiliations

[1 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, School of Nursing, , McMaster University, ; 1280 Main Street West, HSC 3H48C, Hamilton, ON L8S 3Z1 Canada

[2 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, Department of Family Medicine, , McMaster University, ; 1280 Main Street West, 3H48C, Hamilton, ON L8N 3Z5 Canada

[3 ]GRID grid.25152.31, ISNI 0000 0001 2154 235X, St. Thomas More College, , University of Saskatchewan, ; Saskatoon, Canada

[4 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, School of Rehabilitation Science, , McMaster University, ; Hamilton, Canada

[5 ]GRID grid.17063.33, ISNI 0000 0001 2157 2938, Leslie Dan Faculty of Pharmacy, , University of Toronto, ; Toronto, Canada

[6 ]International Observatory on End of Life Care, Lancaster, UK

[7 ]GRID grid.57926.3f, ISNI 0000 0004 1936 9131, Department of Psychology, , University of Regina, ; Regina, Canada

[8 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, Aging, Community and Health Research Unit, School of Nursing, McMaster Institute for Research on Aging/Collaborative for Health and Aging, , McMaster University, ; 1280 Main Street West, HSc 3N25B, Hamilton, ON L8S 4K1 Canada

[9 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, Aging, Community and Health Research Unit, School of Nursing, , McMaster University, ; 1280 Main Street West, HSc 3N25C, Hamilton, ON L8S 4K1 Canada

[10 ]Land O Lakes, USA

[11 ]GRID grid.25073.33, ISNI 0000 0004 1936 8227, Department of Clinical Epidemiology and Biostatistics, , McMaster University, ; Hamilton, ON Canada

[12 ]GRID grid.10419.3d, ISNI 0000000089452978, Department of Public Health and Primary Care, , Leiden University Medical Center, ; Leiden, The Netherlands

[13 ]GRID grid.170693.a, ISNI 0000 0001 2353 285X, School of Aging Studies, , University of South Florida, ; Tampa, FL USA

Author information

Sharon Kaasalainen http://orcid.org/0000-0003-2175-6037

Maureen Markle-Reid https://orcid.org/0000-0002-4019-7077

Jenny Ploeg https://orcid.org/0000-0001-8168-8449

Article

Publisher ID: 575

DOI: 10.1186/s40814-020-00575-4

PMC ID: 7053118

PubMed ID: 32161658

SO-VID: fb109b46-342d-4014-92f2-92d6c960a945

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 27 August 2019

Date accepted : 17 February 2020

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100000143, Alzheimer Society;

Award ID: 16 09

Custom metadata

Keywords: palliative care,long-term care,dementia

Data availability:

Keywords: palliative care, long-term care, dementia

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Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada

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Abstract

Background

Methods

Results

Conclusions

Related collections

Karger: Neurology and Neuroscience

Most cited references 43

Caring for a relative with dementia: family caregiver burden.

Dying with advanced dementia in the nursing home.

End-of-life care and the effects of bereavement on family caregivers of persons with dementia.

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Cited by 7

Most referenced authors 711