Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial
Abstract Background Approximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for...
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| Format: | Article |
| Language: | English |
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BMC
2024-02-01
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| Series: | Pilot and Feasibility Studies |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40814-024-01455-x |
| _version_ | 1827328644919328768 |
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| author | Maimouna Sy Ayush Thacker Orla C. Sheehan Bruce Leff Christine Seel Ritchie |
| author_facet | Maimouna Sy Ayush Thacker Orla C. Sheehan Bruce Leff Christine Seel Ritchie |
| author_sort | Maimouna Sy |
| collection | DOAJ |
| description | Abstract Background Approximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136–46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers. Methods We will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being. Discussion Testing the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices. Trial registration This trial was registered with ClinicalTrials.gov NCT05849259 in May 2023. |
| first_indexed | 2024-03-07T15:20:31Z |
| format | Article |
| id | doaj.art-fdc5ab1542dc480bab33f547f0fc1c6e |
| institution | Directory Open Access Journal |
| issn | 2055-5784 |
| language | English |
| last_indexed | 2024-03-07T15:20:31Z |
| publishDate | 2024-02-01 |
| publisher | BMC |
| record_format | Article |
| series | Pilot and Feasibility Studies |
| spelling | doaj.art-fdc5ab1542dc480bab33f547f0fc1c6e2024-03-05T17:43:06ZengBMCPilot and Feasibility Studies2055-57842024-02-011011810.1186/s40814-024-01455-xCaring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trialMaimouna Sy0Ayush Thacker1Orla C. Sheehan2Bruce Leff3Christine Seel Ritchie4Center for Aging and Serious Illness, Department of Palliative Care and Geriatric Medicine, Massachusetts General HospitalCenter for Aging and Serious Illness, Department of Palliative Care and Geriatric Medicine, Massachusetts General HospitalJohns Hopkins University School of MedicineJohns Hopkins University School of MedicineCenter for Aging and Serious Illness, Department of Palliative Care and Geriatric Medicine, Massachusetts General HospitalAbstract Background Approximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136–46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers. Methods We will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being. Discussion Testing the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices. Trial registration This trial was registered with ClinicalTrials.gov NCT05849259 in May 2023.https://doi.org/10.1186/s40814-024-01455-xDementiaHome-based primary careCaregiverInterventionDementia care |
| spellingShingle | Maimouna Sy Ayush Thacker Orla C. Sheehan Bruce Leff Christine Seel Ritchie Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial Pilot and Feasibility Studies Dementia Home-based primary care Caregiver Intervention Dementia care |
| title | Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial |
| title_full | Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial |
| title_fullStr | Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial |
| title_full_unstemmed | Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial |
| title_short | Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial |
| title_sort | caring for caregivers and persons living with dementia under home based primary care protocol for an interventional clinical trial |
| topic | Dementia Home-based primary care Caregiver Intervention Dementia care |
| url | https://doi.org/10.1186/s40814-024-01455-x |
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