Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers

Tasseron-Dries, Petra E.M.; Smaling, Hanneke J A; Doncker, Sarah M M M; Achterberg, Wilco P.; Steen, Jenny T. van der

doi:10.1016/j.ijnurstu.2021.103968

Cited by 16 publications

(43 citation statements)

References 33 publications

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“…Providing care for a person with dementia is generally considered burdensome [ 12 ] and related to an increased risk of physical and psychosocial health problems [ 12 , 13 , 14 ]. Carer burden does not automatically decrease after LTC admission [ 15 ]; family carers often stay involved [ 16 , 17 ]. Many family carers who were providing unpaid, essential care to LTC residents before the pandemic were now unable to, which likely contributed to reported increases in staff workload, stress and burnout [ 7 , 18 ].…”

Section: Introductionmentioning

confidence: 99%

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Smaling

Tilburgs²,

Achterberg

et al. 2022

IJERPH

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Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

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Section: Introductionmentioning

confidence: 99%

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Smaling

Tilburgs²,

Achterberg

et al. 2022

IJERPH

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“…However, the role of family caregivers requires extra attention in the future, as involving family caregivers was challenging, and healthcare professionals highlighted the added value of family caregivers taking a more active role in formulating specific goals for the resident. Previous studies have reported on the challenges of family involvement ( Puurveen et al, 2018 ; Reid & Chappell, 2017 ; Tasseron-Dries et al, 2021 ). Involvement may differ between family caregivers, as it depends on the degree to which family caregivers consider their own involvement to be important ( Reid & Chappell, 2017 ).…”

Section: Discussionmentioning

confidence: 99%

“…Healthcare professionals may have a crucial leadership role in demonstrating mutual recognition and respect through the creation of welcoming environments that enable the family to participate, the provision of adequate information, and enacting collaborative relationships ( Puurveen et al, 2018 ). Meaningful family involvement may be established by clear communication about mutual expectations, with an emphasis on the benefits for both the resident and family caregiver ( Tasseron-Dries et al, 2021 ). Future research should, together with all stakeholders, investigate how family caregivers can be included and feel motivated to be involved in the WINC project.…”

Section: Discussionmentioning

confidence: 99%

Promoting empowerment for people living with dementia in nursing homes: Development and feasibility evaluation of an empowerment program

Corven¹,

Bielderman²,

Wijnen

et al. 2022

Dementia

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Objectives This article describes the development and feasibility evaluation of an empowerment program for people living with dementia in nursing homes. Methods Development and feasibility evaluation of the empowerment program was guided by the British Medical Research Council’s (MRC) framework. In the developmental phase, we used intervention mapping to develop the theory- and evidence-based intervention. During the feasibility phase, two care teams utilised the program from September to December 2020. We evaluated the feasibility in terms of demand, acceptability, implementation, practicality, integration and limited efficacy. Findings This study showed that, according to healthcare professionals, the program was feasible for promoting empowerment for people living with dementia in a nursing home. Healthcare professionals mentioned an increased awareness regarding the four themes of empowerment (sense of identity, usefulness, control and self-worth), and greater focus on the small things that matter to residents. Healthcare professionals experienced challenges in involving family caregivers. Conclusion An important step is to take into account the implementation prerequisites that follow from our findings, and to further investigate feasibility, as the use of the program and data collection was hindered by the COVID-19 pandemic. Subsequent research could investigate the effects of the empowerment program.

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“…Studies highlight families remaining involved in BPSD management [ 48 ] and leisure activities in care homes [ 49 ]. Further, enhanced knowledge about caregivers’ involvement in NHs shows that it requires careful planning, training, and commitment from staff and families and a mutual understanding of interest [ 50 ]. A good balance between the helper and the professional staff regarding individualized care planning, education, information, and a “care for the carer” strategy may benefit family members’ unfilled needs and improve overall resource utilization in NHs.…”

Section: Discussionmentioning

confidence: 99%

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial

Vislapuu

Berge

Angeles

et al. 2022

BMC Health Serv Res

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Objectives To investigate the association between clinical, demographic, and organizational factors and formal (health professionals) and informal (relatives) resource utilization in nursing home patients with and without dementia. Methods Baseline data from the multicomponent cluster randomized control COSMOS trial including 33 Norwegian nursing homes and 723 residents with and without dementia. Nursing home staff (n = 117) participated as proxy raters to approximate formal and informal resource use in daily care. Measurements The primary outcome was the Resource Utilization in Dementia - Formal Care scale to assess formal and informal care time in hours/month regarding basic activities of daily living (ADL), instrumental ADL, and supervision. Secondary outcomes were hours/week spent on formal and informal leisure activities. Behavioral and psychological symptoms in dementia (BPSD) were assessed by the Neuropsychiatric Inventory-Nursing Home version, physical function by the Physical Self-Maintenance Scale, and psychotropic drug use by the Anatomical Therapeutic Chemical classification system. Organizational factors were ward size and staff ratio. Results Generalized linear mixed-effect models and two-part modelling revealed an association between increased formal care time and poorer physical function, higher agitation and psychotropic drug use and lower cognitive function (all p < .05). Enhanced formal leisure time was related to better ADL function (p < .05) and smaller wards (p < .05). The family related leisure time was associated with agitation, decline in ADL function, smaller wards, and better staffing ratio (all p < .05). Married patients received more informal direct care (p < .05) and leisure time (p < .05) compared to unmarried/widowed. Conclusion For nursing home staff, higher agitation and psychotropic drug use, and lower cognitive function, is associated with more direct care time, whereas leisure time activities are less prioritized in people with lower physical function. Informal caregivers’ engagement is encouraged by smaller nursing homes and better staff ratio. Therefore, we recommend stakeholders and healthcare professionals to consider these clinical and organizational factors to optimize treatment and leisure time activities in nursing home patients with various needs. Trial registration ClinicalTrials.gov; NCT02238652.

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Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers

Cited by 16 publications

References 33 publications

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Promoting empowerment for people living with dementia in nursing homes: Development and feasibility evaluation of an empowerment program

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial

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