Persons with dementia and informal caregivers prioritizing care: A mixed-methods study.
Ontology highlight
ABSTRACT: Introduction
More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community-dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community-dwelling persons with dementia and informal caregivers with the use of an innovative mixed-methods approach.Methods
Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis.Results
The ranking exercise and discussion showed that persons with dementia favored in-home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support.Discussion
Persons with dementia prioritized day-to-day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.
SUBMITTER: Wammes JD
PROVIDER: S-EPMC8346735 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:AimsTo explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers' situation and the acute hospital environment.DesignMixed-methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework.ResultsAlmost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person-centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses.ConclusionPositive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease-oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person-centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements.ImpactThis study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients' caregivers' perspectives. It also provides insights to improve nurses' training and for organizations to make the care and environment more dementia-friendly.
| S-EPMC9292992 | biostudies-literature
Project description:INTRODUCTION:Dementia is on the rise in Canada and globally. Ensuring accessibility to diagnosis, treatment and management throughout the course of the disease is a very significant problem worldwide. In order to provide comprehensive care to patients and their caregivers, enhancing primary care-based dementia care is seen as the way forward. In many Canadian provinces various collaborative care models (collCMs) anchored in primary care to improve dementia care have been developed and implemented. The overall objective of our research programme is to identify key factors for the successful implementation of collCMs, and to facilitate dissemination and scale-up of dementia best practices. METHODS AND ANALYSIS:We will use a convergent mixed-methods design. An observational study using chart review (2014-2016) and questionnaires (2014-2018; repeated in 2020) will measure application of guidelines and implementation of collCMs. This study will be complemented with a qualitative descriptive study using interviews (2017-2020) conducted in parallel. Quantitative and qualitative results will be further integrated using a matrix representing sites and findings. An integrated knowledge exchange strategy will ensure uptake by principal stakeholders throughout the research. ETHICS AND DISSEMINATION:Our study has been approved by all relevant ethics committees. Our dissemination plan follows an integrated knowledge transfer strategy using provincial, national and international councils. We will present the results individually to the clinical sites and then to these councils. Our research will be the first provincial and cross jurisdictional evaluation of primary care models for patients living with dementia, providing evidence on the ongoing debate on the respective role of clinicians in primary care and specialists in caring for patients with dementia.
| S-EPMC7232631 | biostudies-literature
Project description:BackgroundThe goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer's disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p < .05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative's dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression).MethodsAn embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM's effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not.ResultsGrowth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory.ConclusionsThe findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits.Trial registrationClinicalTrials.gov NCT03665909 , retrospectively registered on 11 Sept 2018.
| S-EPMC8684277 | biostudies-literature
Project description:Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ?13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3?=?expressed wishes very coherently, 2?=?somewhat coherently, and 1?=?unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
| S-EPMC6818478 | biostudies-literature
Project description:Background and objectivesThis study aimed to evaluate if and how remote activity monitoring (RAM) improves caregiver outcomes for family members providing care for persons living with Alzheimer's disease or a related dementia (ADRD).Research design and methodsWe conducted an embedded experimental mixed methods study of 132 persons living with ADRD and their family caregivers (n = 64 randomly assigned to RAM treatment condition). In addition to baseline and 6-month quantitative survey data on context of care, primary objective stressors, resources, self-efficacy/competence, and distress collected from caregivers, 6-month RAM review checklists contained open-ended, qualitative information on perceived acceptability of the technology.ResultsThe RAM system did not exert statistically significant effects on caregiving outcomes over a 6-month period. However, qualitative analyses identified several potential moderators of RAM technology effectiveness that were subsequently tested in post-hoc repeated measures analyses of variance. Caregivers who utilized RAM technology and cared for relatives with: (a) less severe cognitive impairment; and (b) difficulty navigating around the home were more likely to indicate statistically significant increases in competence and self-efficacy, respectively.Discussion and implicationsWe found that the early months spent calibrating and modifying RAM are potentially challenging for families, which may prevent this technology from improving caregiving outcomes during initial months of use. Remote activity monitoring may work optimally for caregivers of persons living with ADRD in specific situations (e.g., earlier stages of dementia; wandering risk), which suggests the need for appropriate needs assessments that can better target such innovations.
| S-EPMC6326253 | biostudies-literature
Project description:BackgroundWeb-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.ObjectiveIn this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.MethodsThis was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.ResultsSurvey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.ConclusionsThese findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.
| S-EPMC6134228 | biostudies-literature
Project description:BACKGROUND:As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS:Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS:We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION:We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.
| S-EPMC7670600 | biostudies-literature
Project description:Objectivesto examine the prevalence of and the link of chronic illnesses (CIs) to informal caregivers of persons with dementia (PWDs), as well as to identify characteristics of caregivers with CIs.Methodsthe sample included 124 caregivers of PWDs from a caregiver programme of research. Sociodemographic information and caregivers CIs were collected by an in-person interview. Descriptive statistics, t-tests, chi-square analysis and binary logistic regressions were performed for data analysis.Resultsapproximately 81.5% (n = 101) of caregivers reported having at least one CI, 60.5% (n = 75) reported two or more CIs. Caregivers with CIs were more likely to be older and unemployed; advanced age and female gender were risk factors for CIs. The link of CIs to caregivers was stronger in younger caregivers but weaker in older caregivers when compared with the general population.Conclusiontargeted interventions based on this study need to be developed to improve the health of caregivers of PWDs.
| S-EPMC4047288 | biostudies-literature
Project description:A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: (1) Informal caregivers' roles in interprofessional collaboration with healthcare professionals and (2) Informal caregivers' perception of interprofessional collaboration among healthcare professionals. Informal caregivers' roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers' collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.
| S-EPMC9301172 | biostudies-literature
Project description:Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (? = 0.47), hostility (? = 0.59), and somatization (? = -0.49) had a significant impact on caregivers' HRQoL (R2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate-high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.
| S-EPMC7037057 | biostudies-literature