Skip to main content
BMJ Open logoLink to BMJ Open
. 2024 Aug 21;14(8):e087231. doi: 10.1136/bmjopen-2024-087231

Needs of family caregivers of hospitalised adults with dementia during care transitions: a qualitative study in a US Department of Veterans Affairs Hospital

Molly J Horstman 1,2,, Tracy L Evans 1,3,4, Crystal Guo 5, Mandi Sonnenfeld 1, Aanand D Naik 1,6,7, Alan Stevens 8, Mark E Kunik 1,2,3,9
PMCID: PMC11340712  PMID: 39174071

Abstract

Abstract

Objective

To identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions.

Design

Pragmatic qualitative inquiry with semi-structured interviews.

Setting

Michael E. DeBakey Veterans Affairs Medical Center in Houston, Texas, USA.

Participants

12 family caregivers (family member (n=11); friend (n=1)) and 15 health professionals (hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1), geriatric psychiatrists (n=2)) were interviewed. Caregivers were recruited while their care recipient was hospitalised and were interviewed at least 2 weeks after the care recipient was discharged from the hospital. Health professionals were eligible for the study if they provided care to patients with dementia in the inpatient or outpatient setting.

Results

Four recommendations emerged from the analysis: (1) engage caregivers as partners in the care team, (2) provide dementia-specific information and training, (3) connect caregivers to home and community-based services and (4) provide care navigation and support for the caregiver posthospitalisation.

Conclusions

Hospital care transitions are challenging for caregivers of hospitalised adults living with dementia. Care transition interventions designed to support caregivers with tailored, dementia-specific information and services are needed.

Keywords: caregivers, dementia, hospital to home transition, hospitals, qualitative research


STRENGTHS AND LIMITATIONS OF THIS STUDY.

  • Semistructured interviews were conducted with caregivers of hospitalised adults living with dementia and health professionals to elicit a broad range of perspectives.

  • Caregivers were recruited while the care recipient was in the hospital and interviewed an average of 18 days following hospital discharge to limit recall bias.

  • Health professionals were recruited using purposeful criterion sampling to ensure different professions were represented.

  • Our study was conducted at a single medical centre in the Veterans Health Administration in the USA.

  • Only caregivers of hospitalised adults living with dementia were included in the study; therefore, results may not be applicable to caregivers experiencing other types of care transitions.

Background

In the USA, 32% of adults living with dementia are hospitalised annually.1 Adults living with dementia often experience adverse events during hospitalisation, such as falls, delirium and functional decline.2,4 These adverse events place adults living with dementia at increased risk for poor outcomes following hospital discharge, including increased risk of mortality and hospital readmission compared with adults without dementia.5 Caregiver engagement is a key strategy to improve the quality and safety of hospital care and care transitions for hospitalised adults.6,9 A systematic review of discharge planning interventions found that specifically including the caregiver in discharge planning in the hospital resulted in 25% fewer hospital readmissions at 90 days.8 Yet, family caregivers often do not receive the information and resources needed to manage changes in caregiving demands following hospital discharge.10 11 In the hospital, caregivers report challenges communicating with inpatient clinicians and being excluded from discharge planning discussions.11,19 Following discharge, caregivers face increased caregiving responsibilities, supporting daily activities, completing new medical tasks and monitoring for postdischarge complications, often with no or little additional support.1220,23 The number of adults living with dementia in the USA is expected to double by 2060 to 13.8 million adults.1 With the growing population of adults living with dementia, new strategies are needed to improve hospital care and care transitions for family caregivers of adults living with dementia.

The health and well-being of adults living with dementia during care transitions are, in part, dependent on the health and well-being of the family caregiver. Caregivers who assist with hospital care transitions more often report financial, emotional and physical strain.24 In the stress-process model, increased caregiver stress following hospital discharge may lead to worse outcomes for caregivers and care recipients.25 Thus, interventions aimed at reducing caregiver stress and strain experienced following hospitalisation may improve postdischarge outcomes.25 There are over 40 outpatient and community-based caregiver support interventions for caregivers of adults living with dementia that have improved outcomes as part of a randomised trial and are ready for adaptation and implementation.26 27 However, these caregiver support interventions only address the chronic challenges of caring for someone with dementia and do not address the acute challenges of caring for someone with dementia transitioning from hospital to home.

The 2022 National Strategy to Support Family Caregivers provides policy recommendations for recognising and supporting caregivers in the USA.28 The National Strategy was developed with caregivers, care recipients and other stakeholders in collaboration with federal agencies and calls for the integration of caregivers into all healthcare teams and the inclusion of caregivers in care plan development.28 Yet, the vast majority of research on how to engage and support caregivers of adults living with dementia is based on interventions delivered outside of hospital care transitions. This research aims to identify the needs of dementia caregivers during care transitions to inform the development of a care transition support intervention for caregivers of hospitalised adults with dementia in the Veterans Health Administration. To accomplish this objective, we conducted semistructured interviews with family caregivers of recently hospitalised adults living with dementia and health professionals who care for adults with dementia.

Methods

Qualitative approach and context

This manuscript follows the Standards for Reporting Qualitative Research (online supplemental material 1). This pragmatic qualitative inquiry was conducted at the Michael E. DeBakey Veterans Affairs Medical Center (MEDVAMC) in Houston, Texas.29 Pragmatic qualitative inquiry seeks to gather useful information to solve concrete problems.29 MEDVAMC provides primary, specialty and acute care services to Veterans living in Southeast Texas.

Participant sampling and recruitment

Caregivers and health professionals were recruited to allow for triangulation of the data from two sources. Caregivers were eligible for this study if they were 18 years of age or older, provided at least 8 hours of care or supervision per week to a Veteran living with dementia who was hospitalised for any admitting diagnosis and served as a caregiver primarily due to a personal relationship rather than a financial relationship. Licensed health professionals were eligible for this study if they provided care to Veterans living with Alzheimer’s disease or related dementia in the inpatient or outpatient setting. We used purposeful criterion sampling to ensure that multiple professions relevant to care transitions were included.30 We sought to recruit 2–5 health professionals from the following professions, inpatient physicians, social workers, nurse case managers, and outpatient physicians and advanced practice providers, to reach a total of 15 health professionals with experience with care transitions for Veterans living with dementia.31 32 Caregivers were approached in person in the hospital for recruitment. Due to limited availability of caregivers in the hospital, only 16 caregivers meeting the inclusion criteria were identified in the hospital. We attempted to recruit all caregivers who met the inclusion criteria. Health professionals were approached by email. Health professionals and dementia caregivers provided in-person written informed consent before completing the interview.

Data collection instruments and methods

Separate semistructured interview guides were created for caregivers and health professionals. The caregiver interview guide was structured to identify information and resource needs at three different time points during a care transition: (1) during admission, (2) at hospital discharge and (3) following hospital discharge. Caregivers were asked what they received that helped them care for the Veteran and what they would have liked to receive at each time point. The health professional interview guide was structured for health professionals to provide their opinions on what information and resources caregivers benefit from, what barriers caregivers face following hospital discharge, and what opportunities there are for improvement. Each interview guide was piloted before the study started with health professionals and dementia caregivers who were not study participants. Based on feedback, the number of questions was decreased in both interview guides, and some questions were shortened. No changes were made to the interview guide during the study. The final interview guides are available in online supplemental material 2.

Interviews were completed by phone from February to December 2022. One investigator, who is a hospital medicine physician and health services researcher with qualitative research experience (MJH), conducted each interview. Caregivers were interviewed at least 2 weeks after the Veteran was discharged from the hospital. Health professionals were interviewed at a time convenient to them during their scheduled work hours. The interviewer had worked clinically with most of the health professionals prior to the interviews. All interviews were recorded except for one health professional interview due to a technical failure. Notes were taken during each interview. Field notes and memos were written immediately after each interview to collect important interviewee statements and overall impressions. All recorded interviews were transcribed verbatim and deidentified by a professional transcription service. To minimise the participation burden for the caregivers and health professionals, transcripts were not returned to participants for correction. Due to transcription delays, initial data saturation decisions were based on the field notes and memos and later confirmed during the analysis. Data saturation was the point when no additional information was obtained that would inform intervention development and recruitment was stopped.

Data analysis

Transcribed interviews were analysed using rapid qualitative analysis. Rapid qualitative analysis is a rigorous method for data condensation where chunks of text are summarised and categorised into domains.33 Rapid qualitative analysis, which is commonly used in implementation research, was used to support the rapid turnaround of study results to inform the implementation of a care transition intervention for caregivers of hospitalised adults at MEDVAMC.34 35 The analysis team consisted of four females with backgrounds in hospital medicine, public health, occupational therapy and nursing (MJH, CG, MS and TLE). Three of the analysis team members had experience as a family caregiver of an older adult with cognitive or functional limitations. First, neutral domain names were developed for each interview question. Second, summary templates were created using the domain names for the health professional and the caregiver interviews. To test the summary templates, six health professional interviews and two caregiver interviews were summarised by at least two team members to evaluate consistency across team members. Short quotations were included in the summaries when appropriate. Longer quotations were included at the bottom of the template. Based on team discussion, revisions were made to the summary template to improve the clarity of the domain names. Once agreement among team members was achieved, the remaining interviews were divided between the team members, and each was summarised by a single team member. Summaries were then organised using matrices (online supplemental material 3). A separate matrix was created for health professionals and caregivers.

To compare responses between caregivers and health professionals, the analysis team completed an affinity diagram using the summary statements from each cell of the matrices. Affinity diagramming is an inductive approach used to cluster data to identify themes.36 Each summary statement from the rapid qualitative analysis was printed on a separate card that included the domain name and the research participant’s study identification number. Different coloured cards were used for health professional and caregiver summary statements. Each card was read separately and grouped with cards with similar statements. During the sorting, team members shared how their experience impacted how cards were grouped and sought perspectives from other team members. As groups were formed, labels were created to describe the group. Once all cards were placed in groups, the investigators reviewed the group labels. Labels were revised to be more specific. Two investigators (MJH and CG) then reviewed the cards in each group to check that each card was consistent with the group label. Decisions about whether a card was moved to a different group were made using negotiated consensus.

Patients and public involvement

Caregivers of adults with dementia and health professionals pilot-tested the semistructured interview guides. Their feedback was incorporated into the final interview guides. Patients and the public were not involved in the design or conduct of the study. There are no plans to disseminate the results to study participants.

Results

12 dementia caregivers and 15 health professionals completed semistructured interviews. One additional dementia caregiver provided informed consent but could not be reached to complete the interview. Caregivers identified as the Veteran’s wife (n=6), daughter (n=4), son (n=1) and a friend (n=1). Caregiver mean age was 69 years (range 57–83). Interviews were conducted with caregivers an average of 18 days following hospital discharge (range 14–34). The health professionals were hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1) and geriatric psychiatrists (n=2). Interviews lasted an average of 21.8 min with health professionals and 22.4 min with caregivers. Four recommendations were identified from the affinity diagram. Representative quotations for each recommendation are provided in table 1.

Table 1. Representative quotes by theme.

Caregivers Health professionals
Engage caregivers as partners in the care team
  • ‘…every time he goes to the hospital, I tell the doctor, make sure you give the pill for the irritability because nobody, the nurses don’t know he can get ugly.’ (Caregiver 9)

  • ‘He should be able to do that, brush his teeth, wash his face, wipe himself…they were feeding him that’s, no stop feeding him. Let him feed his self.’ (Caregiver 2)

  • ‘And I said, well, I’ll help you….I’m a therapist.…Let me get him up. Oh, no. He’s a fall risk. I’m like, oh my gosh. If you have a licensed, trained person, I’d say let them help.’ (Caregiver 7)

  • ‘…more communication is definitely one thing we could do. You know either that’s providing updates to the caregiver but also kinda getting feedback from them of how we could be doing things differently in the hospital…I think by kind of having them more engaged…we’re probably helping them with some stress of not knowing what’s happening with their loved one while they’re here.’ (Health Professional 14)

  • ‘But allowing them to be close enough where they could have active involvement with the patient and the team and still get some of that rest, I think would be useful.’ (Health Professional 8)

Provide dementia-specific information and training
  • ‘Well, they never mentioned his dementia.’ (Caregiver 9)

  • ‘…nothing about his dementia, nothing about his cognitive deals, and you know that sort of thing, how to get him back on track.’ (Caregiver 2)

  • ‘…at the hospital they didn’t say much. Like I said, the sleeping pattern he had developed had really been a strain on my own sleeping habits.’ (Caregiver 13)

  • ‘I think one of the things that we also tend to not do a great job of, because we’re meeting the Veteran once, is a better understanding of the general dementia process and what happens as a patient becomes more progressively debilitated from their disease process.’ (Health Professional 4)

  • ‘…behavioral interventions…having a calm pleasant approach, using kind of visual cues, or you know, taking the strengths they have right now in their stage of dementia and kind of highlighting those.’ (Health Professional 14)

Connect caregivers to home and community-based services
  • ‘I need some help there for him [at home], but I don’t know how to get it…This time when he got out of the hospital, I wish they’d say, you know what? We’re gonna send somebody to help you out a little bit at home. That can make the whole thing different.’ (Caregiver 9)

  • ‘The only thing I need is help. And it just seems like sometimes it’s okay, it’s no problem, and then sometimes it seems as though it’s overwhelming. Now, if I had the availability of that respite, I feel like for now, it would be okay…’ (Caregiver 6)

  • ‘Not knowing that the resources exist. Not knowing how to get help. I see a lot of people say, I’ve been a caregiver for this many years and I never knew this existed. I never knew that there was services for Veterans with dementia. I just go to the doctor, and I go back…So just not knowing that the services exist has been the biggest barrier.’ (Health Professional 10)

  • ‘…the homemaker, home health aide program is probably the most important to get started. Because it’s something that can help the caregiver almost immediately to bring some relief if they’re having that caregiver burnout.’ (Health Professional 13)

Provide care navigation and support for the caregiver posthospitalisation
  • ‘But my dad has been so weak that I haven’t made the appointment because I have to coordinate with my [family]…to make sure they’re gonna help me get him in and out of those back steps.’ (Caregiver 7)

  • ‘…he gets tired real easy. All he wants to do is sleep. Like right now, he was getting his physical therapy and he was trying to sleep, and I’d have to keep nudging him and waking him up, you know.’ (Caregiver 13)

  • ‘…I’ve noticed with a simple instruction that he used to like catch on right away. It is taking longer for him to catch on…You have to give him cues and give him cues, and he’s slow to react to those cues.’ (Caregiver 7)

  • ‘I think it is really easy to kind of get lost in the system…I think often times that they don’t necessarily know exactly who to call when they leave or there’s no plan in place when they leave like, okay I can’t get into this appointment or no one’s called me about this clinic yet so I’m not sure what to do now.’ (Health Professional 14)

  • ‘I’m gonna call it a dementia resource coordinator…. probably a social worker or an NP with skills specifically in dementia, who would be reaching out prior to discharge…And then following up within 48 hours after discharge to make sure that things are going well. Obviously, our caregivers they have a lot on their plate. They’re trying to manage a lot.’ (Health Professional 11)

Engage caregivers as partners in the care team

Dementia caregivers felt that ‘communication needs to be better’ (Caregiver 2) in the hospital. Caregivers appreciated the opportunity to speak to health professionals while the Veteran was admitted; however, caregivers reported challenges getting access to health professionals and receiving timely and accurate information. One caregiver who shared caregiving responsibilities with her sister expressed frustration that she and her sister received conflicting information from health professionals. Many caregivers reported that their physical presence in the hospital was necessary for the Veteran to cooperate with medical care. As one caregiver said: ‘…when I was there, then they could take his blood pressure. They could do what they needed to do’ (Caregiver 8). Caregivers provided information to health professionals about the Veteran’s medical conditions and baseline functional status and had to repeat the same information to multiple health professionals. Caregivers were frustrated by restrictions on the Veteran’s ability to participate in activities of daily living in the hospital, such as being able to get out of bed for toileting. Staffing shortages and not allowing the caregiver to assist the veteran were perceived as reasons for limited therapy and mobility during the hospital admission.

Health professionals from all disciplines reported the need for more and better communication between clinicians and caregivers during hospital admission. One health professional stated: ‘…speaking with caregivers…as early as feasibly possible is really important’ (Health Professional 5). Health professionals viewed the hospital admission as ‘the time to do some interventions’ with the caregiver (Health Professional 1). Health professionals noted the importance of policies and systems that allow caregivers to be physically present in the hospital if they are able. This includes hospital policies that allow caregivers unrestricted access to the Veteran and increasing access to free lodging near the Veterans Affairs (VA) hospital.

Provide dementia-specific information and training

During hospital admission, caregivers did not receive specific information about the Veterans’ dementia or the impact that dementia may have on the Veteran’s recovery. Caregivers wanted information about the Veterans’ dementia diagnosis, what to expect regarding disease progression, and skills training around promoting sleep and managing agitation. Caregivers wanted dementia-specific information to help them set realistic expectations for postdischarge care. Caregivers who had learnt strategies to manage agitation and behavioural changes reported learning these skills on their own rather than from a health professional.

Health professionals noted that dementia caregivers need more information about what to expect as dementia progresses. This information was felt to be important during the hospital admission to give the ‘caregiver a realistic expectation’ for the future, develop appropriate discharge plans and discuss the Veteran’s capacity to make medical decisions (Health Professional 6). Health professionals felt that the information and training provided to caregivers in the hospital needed to be decided on a ‘case-by-case basis’ and depended on the caregiver’s previous experience caring for someone living with dementia (Health Professional 1). Health professionals felt having access to training on behavioural interventions to help caregivers manage agitation and other neuropsychiatric symptoms would be beneficial. For example, ‘learning to de-escalate the situation vs trying to reason with someone who doesn’t have that ability anymore’ (Health Professional 7). Health professionals recommended offering multiple formats for providing dementia-specific information and skills training including videos, websites, books, group classes and one-on-one conversations with a health professional.

Connect caregivers to home and community-based services

Several caregivers needed more help at home and did not know how to get help. Caregivers wanted information on respite care and home healthcare, financial support from the VA, free legal services and the caregiver support programme. Caregivers who were the sole caregiver ‘7 days a week’ valued respite care to manage the stress of caregiving (Caregiver 12). For caregivers and Veterans using home and community-based services before the hospitalisation, caregivers reported few challenges restarting services after discharge as home care agencies often called them to restart services. Caregivers of Veterans who had new orders placed for home and community-based services during the hospital admission reported they did not consistently receive those services when they returned home. For Veterans discharged to a skilled nursing facility for rehabilitation, caregivers noted frustration with the amount and quality of therapy received.

Health professionals noted opportunities to provide caregivers with more information about the home and community-based services that are available through the VA. Health professionals felt that caregivers needed information about eligibility as ‘service connection’ impacts access to services, such as VA-paid nursing home care (Health Professional 14). Health professionals of all disciplines believe that home and community-based services that provide caregivers ‘an extra pair of hands’, such as homemaker/home health aides and respite care, contributed positively to caregiver health and well-being (Health Professional 5). Yet, respite services were noted to be ‘significantly underutilised’ following hospital discharge (Health Professional 11). Health professionals noted that referring to VA and community caregiver support groups offered an opportunity to increase social support and helped caregivers know ‘they’re not alone’ (Health Professional 11) Although there were opportunities to improve referrals for home and community-based services, several barriers to arranging services were identified. These include Veterans and caregivers living in rural areas where access to services may be limited, caregiver lack of access to the internet and digital literacy, financial barriers, and caregiver reluctance to allow others in the home. Health professionals also identified gaps in their own knowledge about the available services as a challenge.

Provide care navigation and support for the caregiver posthospitalisation

Although some caregivers felt they received everything they needed from the medical centre to care for the Veteran after discharge, others faced specific challenges. These included not receiving training on how to use medical equipment, confusion about what medications the Veteran should be taking, and inability to bring the Veteran to appointments due to declines in Veteran functional status. Some caregivers needed to provide increased support for daily activities due to Veteran weakness, fatigue, confusion and agitation after discharge. Caregivers recommended having an identified person that caregivers could reach out to for help: ‘have someone that you can call out, reach out to, to assist or that could direct or give you information…’ (Caregiver 14).

Health professionals identified the need to provide caregivers with clear expectations for what they can expect at home and clear guidance on who to contact if things do not go as planned. Health professionals favoured providing dementia caregivers with ‘one point of contact’ following hospital discharge (Health Professional 14). Participants from all health professions recommended the creation of a dementia ‘navigator for the caregivers’ during care transitions that could serve as a ‘bridge’ between inpatient and outpatient care (Health Professional 5, 7). The care navigator would have training in dementia care and be able to provide dementia-specific information and skills training to the caregiver, help the caregiver with problem-solving and ensure that the caregiver and Veteran are connected to home and community-based services.

Discussion

Most adults living with dementia have a family caregiver who will assist them during and after hospital admission. Our study adds to the literature by providing recommendations from caregivers and health professionals on how to support caregivers of hospitalised adults with dementia during care transitions. Caregivers and health professionals viewed hospital admission as an opportunity to provide caregivers with information and training specific to caring for someone living with dementia. Furthermore, hospital admission is an opportunity to connect caregivers to home and community-based services, such as respite care and caregiver support groups, at a time when caregivers are experiencing increased caregiving-related stress.

The information and training provided in the hospital and at discharge are oriented around the medical reason the patient was admitted.37 Adults with dementia are often not admitted to the hospital for dementia.38 39 However, dementia increases the risk for declines in health, function and cognition during hospital admission and impacts postdischarge recovery.4 5 40 This study highlights the need for dementia-specific support for caregivers during care transitions from hospital to home. One of the challenges is that health professionals are not trained to provide this type of support to caregivers during care transitions.11 In this study, caregivers and health professionals recommended having a dedicated dementia care navigator for care transitions. Having a health professional serve as a bridge between care settings is not a new concept.41 However, identification of the need for the health professional delivering the care transition interventions to have specialised knowledge in dementia care is new. Although training and supporting additional staff with expertise in dementia may require an upfront investment from healthcare systems, use of dementia care navigators may lead to a reduction in postdischarge healthcare resource use by the individual living with dementia.42 In the community, non-clinical community health workers with training in dementia care have been integrated into interdisciplinary clinical teams to improve outcomes among adults living with dementia.43 Whether non-clinical community health workers could serve a similar role during hospital care transitions for family caregivers is unknown.

The process of adjusting to life after hospital discharge can take months. Caregivers’ needs will change as caregiving-related stress and capacity fluctuate following hospital discharge.44 Participants in our study recommended that caregiver support be tailored to each caregiver. Tailored information and skills training is a key strategy in evidence-based outpatient and community dementia caregiver support programmes that reduce caregiver burden and depression.45,47 However, the dynamic nature of postdischarge recovery makes it challenging to rely solely on a dementia care navigator to provide tailored training. Combining one-on-one support from a dementia care navigator with eHealth training that automatically tailors to the caregivers’ needs may provide the best balance of one-on-one psychoeducation with on-demand digital support to address emergent challenges following hospital discharge.48

One limitation of this study is that it was conducted at a single medical centre within the Veterans Health Administration. Thus, the results may not apply to hospital systems outside the Veterans Health Administration or in locations where home and community-based services are limited. As a qualitative study, our goal was to gather information to inform the development of a care transitions caregiver support programme for the Veterans Health Administration. The Veterans Health Administration is a leader in family caregiver engagement and has a robust infrastructure of home and community-based services for Veterans living with dementia and their family caregivers. Yet, many caregivers are unaware of the services available and there are no formal structures to support caregivers during care transitions out of the hospital.49 Thus, our results may be relevant to other health systems interested in increasing support for caregivers of hospitalised adults with dementia during care transitions. An additional consideration for this study is that the interviews were conducted by a physician (MJH) who was known to the health professionals. Although this may have impacted the responses of some of the health professionals, it also allowed for more detailed probes as the interviewer was familiar with the healthcare context.

Conclusions

The US healthcare system relies on family caregivers to care for the millions of adults living with dementia who are discharged from hospitals each year. The 2002 National Strategy to Support Family Caregivers in the USA provides a comprehensive set of policy recommendations for all levels of government and community organisations to engage and support caregivers across care settings.28 The benefits of supporting caregivers in outpatient and community settings have been demonstrated in decades of research. Hospital admissions are a time of increased stress for dementia caregivers, yet there are no interventions designed to address caregivers’ needs during care transitions. Failing to support caregivers during care transitions may have a negative impact on caregiver and care recipient health. This study provides recommendations from caregivers and health professionals that can inform future caregiver support interventions for care transitions.

supplementary material

online supplemental file 1
bmjopen-14-8-s001.pdf (508.5KB, pdf)
DOI: 10.1136/bmjopen-2024-087231
online supplemental file 2
bmjopen-14-8-s002.pdf (58.3KB, pdf)
DOI: 10.1136/bmjopen-2024-087231
online supplemental file 3
bmjopen-14-8-s003.pdf (55.2KB, pdf)
DOI: 10.1136/bmjopen-2024-087231

The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs, the US government or Baylor College of Medicine.

Footnotes

Funding: This work is supported in part by the Office of Research and Development, Houston Health Services Research and Development Center for Innovations in Quality, Effectiveness and Safety (IQuESt) grant (CIN 13-413) at the Michael E. DeBakey VA Medical Center, Houston, TX. MJH is supported by Career Development Award Number 1IK2HX003163-01A2 from the US Department of Veterans Affairs Health Services Research and Development Service of the VA Office of Research and Development. This work was also supported by the National Institute on Aging (R01AG061973-04-S1).

Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2024-087231).

Provenance and peer review: Not commissioned; externally peer reviewed.

Patient consent for publication: Not applicable.

Ethics approval: This study involves human participants and was approved by the Baylor College of Medicine Institutional Review Board (H-49610) and the Michael E. DeBakey VA Medical Center Research and Development Committee. Participants gave informed consent to participate in the study before taking part.

Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Contributor Information

Molly J Horstman, Email: molly.horstman@bcm.edu.

Tracy L Evans, Email: tracy.evans@bcm.edu.

Crystal Guo, Email: crystal.guo897@gmail.com.

Mandi Sonnenfeld, Email: mandi.sonnenfeld@bcm.edu.

Aanand D Naik, Email: Aanand.Naik@uth.tmc.edu.

Alan Stevens, Email: Alan.Stevens@BSWHealth.org.

Mark E Kunik, Email: mark.kunik@bcm.edu.

Data availability statement

Data are available on reasonable request.

References

  • 1.2023 Alzheimer’s disease facts and figures. Alzheimers Dement. 2023;19:1598–695. doi: 10.1002/alz.13016. [DOI] [PubMed] [Google Scholar]
  • 2.Oh ES, Fong TG, Hshieh TT, et al. Delirium in older persons: advances in diagnosis and treatment. JAMA. 2017;318:1161–74. doi: 10.1001/jama.2017.12067. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 3.Härlein J, Halfens RJG, Dassen T, et al. Falls in older hospital inpatients and the effect of cognitive impairment: a secondary analysis of prevalence studies. J Clin Nurs. 2011;20:175–83. doi: 10.1111/j.1365-2702.2010.03460.x. [DOI] [PubMed] [Google Scholar]
  • 4.Sands LP, Yaffe K, Covinsky K, et al. Cognitive screening predicts magnitude of functional recovery from admission to 3 months after discharge in hospitalized elders. J Gerontol A Biol Sci Med Sci. 2003;58:37–45. doi: 10.1093/gerona/58.1.m37. [DOI] [PubMed] [Google Scholar]
  • 5.Anderson TS, Marcantonio ER, McCarthy EP, et al. Association of diagnosed dementia with post-discharge mortality and readmission among hospitalized medicare beneficiaries. J Gen Intern Med. 2022;37:4062–70. doi: 10.1007/s11606-022-07549-7. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 6.Levoy K, Rivera E, McHugh M, et al. Caregiver engagement enhances outcomes among randomized control trials of transitional care interventions: a systematic review and meta-analysis. Med Care. 2022;60:519–29. doi: 10.1097/MLR.0000000000001728. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 7.Luxford K, Axam A, Hasnip F, et al. Improving clinician-carer communication for safer hospital care: a study of the “TOP 5” strategy in patients with dementia. Int J Qual Health Care. 2015;27:175–82. doi: 10.1093/intqhc/mzv026. [DOI] [PubMed] [Google Scholar]
  • 8.Rodakowski J, Rocco PB, Ortiz M, et al. Caregiver integration during discharge planning for older adults to reduce resource use: a metaanalysis. J Am Geriatr Soc. 2017;65:1748–55. doi: 10.1111/jgs.14873. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 9.Schulz R, Eden J, National Academies of Sciences, Engineering, and Medicine (U.S.) Families caring for an aging America. The National Academies Press; 2016. [PubMed] [Google Scholar]
  • 10.Bauer M, Fitzgerald L, Koch S, et al. How family carers view hospital discharge planning for the older person with a dementia. Dementia (London) 2011;10:317–23. doi: 10.1177/1471301211407790. [DOI] [Google Scholar]
  • 11.Golden BP, Block L, Benson C, et al. Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage. J Am Geriatr Soc. 2023;71:3435–44. doi: 10.1111/jgs.18541. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12.Fitzgerald LR, Bauer M, Koch SH, et al. Hospital discharge: recommendations for performance improvement for family carers of people with dementia. Aust Health Review. 2011;35:364. doi: 10.1071/AH09811. [DOI] [PubMed] [Google Scholar]
  • 13.Bauer M, Fitzgerald L, Koch S. Hospital discharge as experienced by family carers of people with dementia: a case for quality improvement. J Healthc Qual. 2011;33:9–16. doi: 10.1111/j.1945-1474.2011.00122.x. [DOI] [PubMed] [Google Scholar]
  • 14.Sawan MJ, Jeon Y-H, Bond C, et al. Caregivers’ experiences of medication management advice for people living with dementia at discharge. J Eval Clin Pract. 2021;27:1252–61. doi: 10.1111/jep.13551. [DOI] [PubMed] [Google Scholar]
  • 15.Stockwell-Smith G, Moyle W, Marshall AP, et al. Hospital discharge processes involving older adults living with dementia: An integrated literature review. J Clin Nurs. 2018;27:e712–25. doi: 10.1111/jocn.14144. [DOI] [PubMed] [Google Scholar]
  • 16.Bloomer M, Digby R, Tan H, et al. The experience of family carers of people with dementia who are hospitalised. Dementia (London) 2016;15:1234–45. doi: 10.1177/1471301214558308. [DOI] [PubMed] [Google Scholar]
  • 17.Beardon S, Patel K, Davies B, et al. Informal carers’ perspectives on the delivery of acute hospital care for patients with dementia: a systematic review. BMC Geriatr. 2018;18:23. doi: 10.1186/s12877-018-0710-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18.Whittamore KH, Goldberg SE, Bradshaw LE, et al. Factors associated with family caregiver dissatisfaction with acute hospital care of older cognitively impaired relatives. J Am Geriatr Soc. 2014;62:2252–60. doi: 10.1111/jgs.13147. [DOI] [PubMed] [Google Scholar]
  • 19.Jurgens FJ, Clissett P, Gladman JRF, et al. Why are family carers of people with dementia dissatisfied with general hospital care? A qualitative study. BMC Geriatr. 2012;12:57. doi: 10.1186/1471-2318-12-57. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 20.Kovaleva MA, Kleinpell R, Dietrich MS, et al. Caregivers’ experience with tele-savvy caregiver program post-hospitalization. Geriatr Nurs. 2023;51:156–66. doi: 10.1016/j.gerinurse.2023.03.002. [DOI] [PubMed] [Google Scholar]
  • 21.Reinhard SC, Young HM, Levin C. Home alone revisited: family caregivers providing complex care. Innov Aging. 2019;3:S747–8. doi: 10.1093/geroni/igz038.2740. [DOI] [Google Scholar]
  • 22.Mockford C, Seers K, Murray M, et al. The development of service user‐led recommendations for health and social care services on leaving hospital with memory loss or dementia – the SHARED study. Health Expect. 2017;20:495–507. doi: 10.1111/hex.12477. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 23.Coleman EA, Roman SP. Family caregivers’ experiences during transitions out of hospital. J Healthc Qual. 2015;37:12–21. doi: 10.1097/01.JHQ.0000460117.83437.b3. [DOI] [PubMed] [Google Scholar]
  • 24.Burgdorf JG, Fabius CD, Riffin C, et al. Receipt of posthospitalization care training among medicare beneficiaries’ family caregivers. JAMA Netw Open. 2021;4:e211806. doi: 10.1001/jamanetworkopen.2021.1806. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 25.Pearlin LI, Mullan JT, Semple SJ, et al. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30:583–94. doi: 10.1093/geront/30.5.583. [DOI] [PubMed] [Google Scholar]
  • 26.Gitlin LN, Marx K, Stanley IH, et al. Translating evidence-based dementia caregiving interventions into practice: state-of-the-science and next steps. Gerontologist. 2015;55:210–26. doi: 10.1093/geront/gnu123. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 27.Benjamin Rose Institute on Aging, Family Caregiver Alliance Best programs for caregiving. https://bpc.caregiver.org/#home Available.
  • 28.National Strategy to Support Family Caregivers The recognize, assist, include, support, and engage (RAISE) act family caregiving council & the advisory council to support grandparents raising grandchildren. 2022. https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers-2.pdf Available.
  • 29.Patton MQ. Qualitative research & evaluation methods: integrating theory and practice. 4th. SAGE Publications, Inc; 2015. edn. [Google Scholar]
  • 30.Palinkas LA, Horwitz SM, Green CA, et al. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015;42:533–44. doi: 10.1007/s10488-013-0528-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 31.Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Soc Sci Med. 2022;292:114523. doi: 10.1016/j.socscimed.2021.114523. [DOI] [PubMed] [Google Scholar]
  • 32.Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26:1753–60. doi: 10.1177/1049732315617444. [DOI] [PubMed] [Google Scholar]
  • 33.Hamilton A. Qualitative methods in rapid turn-around health services research. https://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/780-notes.pdf Available.
  • 34.Hamilton AB, Finley EP. Qualitative methods in implementation research: An introduction. Psychiatry Res. 2019;280:112516. doi: 10.1016/j.psychres.2019.112516. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 35.National Cancer Institute Divsion of Cancer Control and Population Sciences Qualitative methods in implementation science. https://cancercontrol.cancer.gov/sites/default/files/2020-09/nci-dccps-implementationscience-whitepaper.pdf Available.
  • 36.Martin B, Hanington BM. Universal methods of design: 100 ways to research complex problems, develop innovative ideas, and design effective solutions . Rockport Publishers; 2012. [Google Scholar]
  • 37.Coleman EA. Family caregivers as partners in care transitions: The caregiver advise record and enable act. J Hosp Med. 2016;11:883–5. doi: 10.1002/jhm.2637. [DOI] [PubMed] [Google Scholar]
  • 38.Rudolph JL, Zanin NM, Jones RN, et al. Hospitalization in community-dwelling persons with Alzheimer’s disease: frequency and causes. J Am Geriatr Soc. 2010;58:1542–8. doi: 10.1111/j.1532-5415.2010.02924.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 39.Anderson TS, Marcantonio ER, McCarthy EP, et al. National trends in potentially preventable hospitalizations of older adults with dementia. J Am Geriatr Soc. 2020;68:2240–8. doi: 10.1111/jgs.16636. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 40.Fick DM, Steis MR, Waller JL, et al. Delirium superimposed on dementia is associated with prolonged length of stay and poor outcomes in hospitalized older adults. J Hosp Med. 2013;8:500–5. doi: 10.1002/jhm.2077. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 41.Rennke S, Nguyen OK, Shoeb MH, et al. Hospital-initiated transitional care interventions as a patient safety strategy: a systematic review. Ann Intern Med. 2013;158:433–40. doi: 10.7326/0003-4819-158-5-201303051-00011. [DOI] [PubMed] [Google Scholar]
  • 42.Stevens AB, Hochhalter AK, Basu R, et al. A model program of community-based supports for older adults at risk of nursing dacility placement. J Am Geriatr Soc. 2015;63:2601–9. doi: 10.1111/jgs.13831. [DOI] [PubMed] [Google Scholar]
  • 43.Willink A, Davis K, Johnston DM, et al. Cost-effective care coordination for people with dementia at home. Innov Aging. 2020;4:igz051. doi: 10.1093/geroni/igz051. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 44.Werner NE, Tong M, Borkenhagen A, et al. Performance-shaping factors affecting older adults’ hospital-to-home transition success: a systems approach. Gerontol. 2019;59:303–14. doi: 10.1093/geront/gnx199. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 45.Belle SH, Burgio L, Burns R, et al. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006;145:727–38. doi: 10.7326/0003-4819-145-10-200611210-00005. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 46.Nichols LO, Martindale-Adams J, Burns R, et al. Translation of a dementia caregiver support program in a health care system--REACH VA. Arch Intern Med. 2011;171:353–9. doi: 10.1001/archinternmed.2010.548. [DOI] [PubMed] [Google Scholar]
  • 47.Cho J, Luk-Jones S, Smith DR, et al. Evaluation of REACH-TX: a community-based approach to the REACH II intervention. Innov Aging. 2019;3:igz022. doi: 10.1093/geroni/igz022. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 48.Zhu EM, Buljac-Samardžić M, Ahaus K, et al. Implementation and dissemination of home- and community-based interventions for informal caregivers of people living with dementia: a systematic scoping review. Implementation Sci . 2023;18:60. doi: 10.1186/s13012-023-01314-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 49.Leykum LK. Supporting the needs of caregivers through research. U.S department of veterans affairs veterans health administration health services research & development service. 2023. https://www.hsrd.research.va.gov/publications/forum/spring23/Forum_Spring2023.pdf Available.

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Supplementary Materials

    online supplemental file 1
    bmjopen-14-8-s001.pdf (508.5KB, pdf)
    DOI: 10.1136/bmjopen-2024-087231
    online supplemental file 2
    bmjopen-14-8-s002.pdf (58.3KB, pdf)
    DOI: 10.1136/bmjopen-2024-087231
    online supplemental file 3
    bmjopen-14-8-s003.pdf (55.2KB, pdf)
    DOI: 10.1136/bmjopen-2024-087231

    Data Availability Statement

    Data are available on reasonable request.


    Articles from BMJ Open are provided here courtesy of BMJ Publishing Group

    RESOURCES