scholarly journals Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: A Qualitative Study among Formal and Informal Caregivers (Preprint)

2020 ◽  
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Focus Groups ◽  
Independent Living ◽  
Informal Caregivers ◽  
Home Monitoring ◽  
Dementia Care ◽  
Community Dwelling ◽  
Formal Caregivers ◽  
Home Based ◽  
Expected Benefits ◽  
Monitoring Technologies

BACKGROUND Due to a growing shortage in residential care, people with dementia (PwD) will increasingly be encouraged to live at home for longer. While extended independent living is preferred by PwD, it also puts more pressure on both the informal and formal care network. To support (in)formal caregivers of PwD, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor lifestyle, health and safety of PwD. These solutions will, despite their potential, only be viable if they meet the expectations and needs of formal and informal caregivers of PwD. OBJECTIVE The objective of this study was to explore expected benefits, barriers, needs and requirements towards unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling PwD. METHODS A combination of semi-structured interviews and focus groups was used to collect data among informal (N=19) and formal (N=16) caregivers of PwD. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. RESULTS Results showed that formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should especially be used to monitor (the risk of) falls, day- and night rhythm, personal hygiene, nocturnal restlessness and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking selfcare information, extended independent living, objective communication, prevention and pro-active measures, emotional reassurance and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. At the same time, main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed and how the technology should be integrated into the existing work context. CONCLUSIONS Despite the presence of barriers, formal and informal caregivers of PwD generally saw value in unobtrusive in-home monitoring and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are taken into account. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

scholarly journals Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers

JMIR Aging ◽  
10.2196/26875 ◽  
2021 ◽  
Vol 4 (2) ◽  
pp. e26875
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Focus Groups ◽  
Independent Living ◽  
Informal Caregivers ◽  
Home Monitoring ◽  
Dementia Care ◽  
Formal Caregivers ◽  
People With Dementia ◽  
Home Based ◽  
Expected Benefits ◽  
Monitoring Technologies

Background Due to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia. Objective The objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia. Methods A combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. Results Formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context. Conclusions Despite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

scholarly journals Voices of Caregivers: Key Demands Towards AI-driven Home Monitoring in Community-based Dementia Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 664-664
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Ethical Issues ◽  
Qualitative Content Analysis ◽  
Home Monitoring ◽  
Dementia Care ◽  
Community Dwelling ◽  
Care Recipient ◽  
Informational Privacy ◽  
People With Dementia ◽  
Home Based ◽  
Monitoring Technologies

Abstract While most people with dementia prefer to live at home for as long as possible, this also puts more pressure on both their informal and formal care network. To provide support in home-based dementia care, there is growing interest in technology that allows caregivers to remotely monitor health and safety of people with dementia. Novel generations of these technologies are using non-wearable, pervasive sensors coupled with algorithms to continuously collect and model meaningful in-home information. However, while these self-learning monitoring systems develop rapidly, their target users’ views and demands are still insufficiently mapped out. To identify possible barriers to acceptance and ways to overcome these, we conducted a scenario-based study, including semi-structured interviews with informal caregivers (n=19) and focus groups with home care professionals (n=16) of community-dwelling people with dementia. Inductive qualitative content analysis revealed that both groups of caregivers were concerned about the informational privacy of their care recipient with dementia, information overload, and ethical issues related to dehumanizing care. Identified demands mainly centered around how to overcome these barriers. We identified several demands related to specific functionalities, user experience factors, services surrounding the technology, and integration into the existing work context. Most notably, caregivers highlighted the importance of introducing AI-driven in-home monitoring technologies in a way it prevents them from feeling undervalued. In conclusion, our findings can help to inform the development of more acceptable and unobtrusive in-home monitoring technologies to support home-based dementia care.

Focus Groups to Inform Further Development of a Digital Therapeutic Platform for Home Care Agencies in Dementia Care (Preprint)

2021 ◽  
Author(s):  
Aaron M Gilson ◽  
Michele C Gassman ◽  
Debby Dodds ◽  
Robin Lombardo ◽  
James H Ford II ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Home Care ◽  
Focus Groups ◽  
Informal Caregivers ◽  
Dementia Care ◽  
Formal Caregivers ◽  
Care Services ◽  
Further Development ◽  
Care Agency ◽  
Home Care Agency

BACKGROUND Persons living with dementia (PLWD) require increasing levels of care and the care model for PLWD has evolved. The Centers for Medicare & Medicaid Services is transitioning long-term care services from institutional care to home or community-based services, including reimbursement for non-clinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for PLWD. To live at home longer, PLWD require support from formal caregivers (i.e., paid professionals), who often lack knowledge of PLWDs’ personal histories and have high turnover, and/or informal caregivers (e.g., family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect (GC) platform was developed to support PLWD and their formal and informal caregivers. In preliminary studies, the GC platform improved moods for PLWD and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a National Institutes of Health Small Business Innovation Research (NIH SBIR) grant to improve clinical outcomes, reduce healthcare costs, and lower out-of-pocket costs for PLWD who receive care through home care agencies. OBJECTIVE To conduct stakeholder focus groups to develop a better understanding about existing processes, needs, barriers, and goals for the use of the GC platform by home care agencies and formal and informal caregivers. METHODS A series of focus groups were conducted with 1) home care agency corporate leadership, 2) home care agency franchise owners, 3) home care agency formal caregivers, and 4) informal caregivers of PLWD. The qualitative approach allowed for the unrestricted generation of ideas that would best inform the development of the GC platform developers to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve formal caregiver well-being, and extend PLWD ability to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was utilized to identify thematic categories from the transcripts. RESULTS A total of 39 participants participated across the six stakeholder focus groups. Five overarching themes were identified: (1) Technology-Related; (2) Care Services; (3) Data, Documentation, Outcomes; (4) Cost, Finance, Resources; and (5) Resources for Caregivers. Within each theme, the most frequent sub-themes were identified. Exemplar stakeholder group statements were compiled to provide support for each of the identified themes. CONCLUSIONS Focus group results will inform further development of the GC platform to reduce the burden of caregiving for PLWD, evaluate changes in cognition, preserve functional independence, and promote engagement between PLWD and caregivers. The next step is to evaluate the effectiveness of the GC platform in a NIH SBIR Phase 2 clinical trial to assess its efficacy of evidence-based interventions and market viability. CLINICALTRIAL This Phase 1 study did not meet the criteria for an Applicable Clinical Trial and therefore it was not registered on clinicaltrials.gov.

EFFECTS OF COMPUTERIZED COGNITIVE TRAINING ON GAIT SPEED IN COMMUNITY DWELLING OLDER ADULTS, A PILOT STUDY

2016 ◽  
pp. 1-6
Author(s):  
J. Blackwood ◽  
T. Houston
Keyword(s):  
Older Adults ◽  
Cognitive Training ◽  
Gait Speed ◽  
Independent Living ◽  
Functional Decline ◽  
Community Dwelling ◽  
Computerized Cognitive Training ◽  
Home Based ◽  
Improved Function ◽  
Community Dwelling Older Adults

Background: In older adults declines in gait speed have been identified as predictors of functional decline and have been found in those with cognitive dysfunction. Cognitive training interventions that emphasize addressing executive function (EF) have resulted in a transfer effect from training cognitive processes into improved function. However research examining the effects of an EF specific computerized cognitive training (CCT) program on gait speed (GS) is limited. Objectives: To compare the effects of a six week EF specific CCT program on GS in community dwelling older adults using a pretest/posttest experimental design with subgroup comparisons based on a cutoff GS of 1.0m/s. Setting: Home based Participants: Forty independent living older adults (>65 years) without diagnosed cognitive impairment participated in either the intervention or control groups. Intervention: A six week long progressively challenging EF focused CCT program was performed at home. Measurements: Demographic variables, cognitive function (Trail-Making Test Part B) and GS were measured at baseline at week 7. Between group comparisons were completed for the whole sample initially with subgroup comparisons performed based on participants’ initial GS (Slow walkers: GS<1.0m/s; Fast Walkers: GS>1.0m/s). Results: No differences in GS were found for the whole population, but subgroup analyses restricted to slow walkers demonstrated a statistically significant improvement in GS after 6 weeks of CCT (µ =0.33 m/s, p = 0.03). Other outcomes measures were not statistically different at posttest. Conclusions: Older adults who walk at speeds <1.0m/s may benefit from a progressively challenging CCT program when self-administered in the home.

ActivABLES, a tangible interaction to promote home-based exercise and physical activity of community-dwelling stroke survivors: A development paper (Preprint)

2019 ◽  
Author(s):  
Steinunn Olafsdottir ◽  
Helga Jónsdóttir ◽  
Charlotte Magnusson ◽  
Héctor Caltenco ◽  
Mikko Kytö ◽  
...  
Keyword(s):  
Physical Activity ◽  
Feasibility Study ◽  
Development Process ◽  
Informal Caregivers ◽  
Community Dwelling ◽  
Stroke Survivors ◽  
Home Based ◽  
Balance Exercises ◽  
Mrc Framework ◽  
Human Centred Design

BACKGROUND Novel technical solutions are called for to promote home-based exercise and facilitate engagement in physical activity among community-dwelling stroke survivors supported by their caregivers in the home environment. Lack of knowledge and resources on what to do and how to accomplish this has been demonstrated. OBJECTIVE To describe in detail the development of a technical intervention, ActivABLES, to promote home-based exercise and physical activity engagement of community-dwelling stroke survivors with support from their informal caregivers. METHODS Technical development process of ActivABLES was guided by Human-Centred Design and participatory design/co-design as well as the Medical Research Council (MRC) framework for the development and evaluation of complex interventions. The main steps included: (a) Synthesis of the evidence supported the inclusion of balance exercises, mobility and walking exercises, exercises for the upper arm and means to decrease sedentary behavior; b) Initial user studies with qualitative data collection from individual interviews with stroke survivors and focus group interviews with informal caregivers and health professionals; c) Preliminary testing of eight prototypes with seven stroke survivors and their informal caregivers which included introduction and testing of the prototypes; d) Feasibility study of six prototypes with ten stroke survivors and their informal caregivers which included use of ActivABLES for four weeks. RESULTS After the preliminary testing of eight prototypes, four prototypes were not further developed whereas four prototypes were modified further. In addition, two new prototypes were developed, leaving six prototypes constructed for use in the feasibility study. These included: 1) ActivFOAM, a soft mat for balance exercises, 2) WalkingSTARR, an iPhone application to facilitate walking, 3) ActivBALL, a soft ball for hand exercises, 4) ActivSTICKS, two linked plastic sticks for upper arm exercises and trunk rotation and 5) the ActivLAMP and 6) the ActivTREE which both give visual feedback (lights) for progress of daily exercise and physical activities. ActivFOAM, ActivBALL and ActivSTICKS are all connected to a tablet where exercise instructions are given. All the exercise prototypes can be connected to ActivLAMP and ActivTREE to give feedback on how much exercise the user has done. Settings can be individualized and recommended daily time and/or repetition can easily be changed as the user further progresses to higher activity levels. CONCLUSIONS The development process of ActivABLES was guided by the human-centred design, with iterative testing of future users, and the MRC framework of complex intervention, with repeated process of development and testing. This process resulted in six prototypes which aim to promote home-based exercise and facilitate physical activity engagement of community-dwelling stroke survivors and were used in a feasibility study. Further research with a larger sample of stroke survivors and a more robust design is needed to substantiate these results.

scholarly journals Who Cares for Whom and Is That important? A Typology of Dementia Care Dyads and Health-Related Support Measures

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 757-758
Author(s):  
Karin Wolf-Ostermann ◽  
Henrik Wiegelmann ◽  
Liane Schirra-Weirich ◽  
Lisa-Marie Verhaert ◽  
Werner Brannath ◽  
...  
Keyword(s):  
Latent Class ◽  
Decisive Role ◽  
Dementia Care ◽  
Community Dwelling ◽  
Living Situation ◽  
Disease Characteristics ◽  
Home Based ◽  
Care And Support ◽  
Health Related ◽  
Person With Dementia

Abstract In Germany, about 70% of all care-dependent persons are community dwelling. In dementia care arrangements you will commonly find a primary informal caregiver (IC) taking on the decisive role in providing care and support for the person with dementia (PwD). This study aimed to develop a typology of dyads based on typical characteristics of the PwD, the IC and their relationship and to gain a better understanding of home-based dementia care arrangements. A latent class analysis was used to detect different dyad types based on personal, social, care and disease characteristics of 551 dyads of CGs and PwD living at home. A 6-class model was identified. The classes could be differentiated based on IC-PwD key characteristics (gender, age, relationship, living situation, occupation). There are significant differences with regard to observed outcomes. The verification of different types of dyads strengthens the need to develop tailored dyad-centred interventions in dementia care

scholarly journals Satisfaction with Health Care Interventions among Community Dwelling People with Cognitive Disorders and Their Informal Caregivers—A Systematic Review

Healthcare ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 240
Author(s):  
Agneta Malmgren Fänge ◽  
Björg Thordardottir ◽  
Metuge Ankhesnamon Ya-Nyonge ◽  
Connie Lethin
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Informal Caregivers ◽  
Cognitive Disorders ◽  
Community Dwelling ◽  
Current Evidence ◽  
Care Services ◽  
Leading Role ◽  
Home Based ◽  
Use Of Services

Informal caregivers have a leading role when implementing health care services for people with cognitive disorders living at home. This study aims to examine the current evidence for interventions with dual satisfaction with health care services for people with cognitive disorders and their caregivers. Original papers with quantitative and mixed method designs were extracted from two databases, covering years 2009–2018. Thirty-five original papers reported on satisfaction with health care services. The International Classification of Health Interventions (ICHI) was used to classify the interventions. Most interventions had a home-based approach (80%). Reduction in caregiver depression was the outcome measure with the highest level of satisfaction. Interventions to reduce depression or increase cognitive performance in persons with cognitive disorders gave the least satisfaction. Satisfaction of both caregivers and persons with cognitive disorders increased their use of services. In the ICHI, nearly 50% of the interventions were classified as activities and participation. A limited number of interventions have a positive effect on satisfaction of both the persons with cognitive disorders and the caregiver. It is important to focus on interventions that will benefit both simultaneously. More research is needed with a clear definition of satisfaction and the use of the ICHI guidelines.

Apathy in Dementia Care

GeroPsych ◽  
2016 ◽  
Vol 29 (3) ◽  
pp. 129-139 ◽  
Author(s):  
Lena Köller ◽  
Maren Knebel ◽  
Julia Haberstroh ◽  
Katharina Krause ◽  
Sandra Sahlender ◽  
...  
Keyword(s):  
Cognitive Deficits ◽  
Dementia Care ◽  
Community Dwelling ◽  
Global Deterioration Scale ◽  
Formal Caregivers ◽  
High Prevalence ◽  
Severity Of Dementia ◽  
Goal Directed Behavior ◽  
State Examination

Abstract. Apathy is a diminished goal-directed behavior stemming from a lack of motivation. It is one of the most common symptoms in dementia. While the Apathy Evaluation Scale (AES) has proved to be a psychometrically robust measure for assessing apathy, the German version (AESD) requires further validation. Associations of apathy with important variables in dementia care, such as cognitive impairment or caregiver burden, were repeatedly found, though contradictory findings have also been reported. The present study assessed apathy in 100 community-dwelling persons with dementia. Their informal and formal caregivers used the German informant version of the Apathy Evaluation Scale (AESD-I) to investigate the severity of dementia and cognitive deficits as measured with the Mini-Mental State Examination (MMSE) and Global Deterioration Scale (GDS), respectively. A reliability analysis was performed to estimate the internal consistency of the AESD-I, and the data were tested for potential correlations with results from a shortened version of the AESD-I (AESD16-I). Cronbach’s α was .880 for the AESD-I and .904 for the AESD16-I. The prevalence of apathy was 77%, its severity was on average moderate to high. Significant (p < .05) negative correlations were shown between the AESD16-I, the Barthel Index (BI), and the Quality of Life-Alzheimer’s Disease (QOL-AD). Correlations between the AESD16-I, GDS, and Zarit Burden Interview were positive. After Bonferroni correction, the only correlations that remained significant were between the AESD16-I and BI and QOL-AD. The present study underlines the favorable psychometric properties of the AESD-I and confirms the high prevalence of apathy with considerable severity in the sample of community-dwelling persons with dementia. In addition, it contributes to the diversity of evidence on clinical correlates of apathy which require further clarification.

scholarly journals Factors influencing Implementation of eHealth technologies to Support Informal Dementia Care: An Umbrella Review (Preprint)

2021 ◽  
Author(s):  
Sofia Bastoni ◽  
Christian Wrede ◽  
Marcia Cristina da Silva ◽  
Robbert Sanderman ◽  
Andrea Gaggioli ◽  
...  
Keyword(s):  
Informal Caregiver ◽  
Informal Caregivers ◽  
Dementia Care ◽  
Community Dwelling ◽  
Future Research ◽  
Umbrella Review ◽  
Home Setting ◽  
Factors Influencing ◽  
Sustainable Implementation ◽  
People With Dementia

BACKGROUND The increasing number of community-dwelling people with dementia worldwide underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. Sustainable implementation of eHealth technologies within this target group can, however, be difficult. OBJECTIVE The goal of this study was to gain a more complete understanding of why, although numerous eHealth technologies are designed to support people with dementia and their informal caregivers at home, it is often found difficult to implement them in practice. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. METHODS Following an umbrella review design, 5 different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews, resulting in 3109 hits. After removing 904 duplicates and 2061 irrelevant papers, 144 results were considered for full-text screening. Finally, 21 papers were included for this review. A combination of deductive and inductive thematic analysis was performed, using the NASSS framework for organizing the findings. RESULTS We mostly identified technologies designed to be used “by informal caregivers”, followed by technologies used “by people with dementia” and technologies used “with people with dementia”. Within those user groups, most represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health and safety, (ii) technologies for supporting memory, orientation and day structure, and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most identified factors influencing sustainable implementation related to the condition of dementia, characteristics of the technology, the expected or perceived value of users, and characteristics of the informal caregiver. Considerably less has been reported on factors related to the implementing organization and technology supplier, the wider institutional and sociocultural context of policy and regulations, and the continued adaptation of technology over time. CONCLUSIONS Our study created a comprehensive overview of eHealth technologies studied in the context of informal dementia care and contributes to a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and the continuous adaptation on the long term. Although future research is needed, the current findings can help researchers and stakeholders improving the development and implementation of eHealth technologies to support informal dementia care.

scholarly journals How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers’ Outcomes?

2019 ◽  
Vol 36 (11) ◽  
pp. 1008-1015 ◽  
Author(s):  
Jannie A. Boogaard ◽  
Jenny T. van der Steen ◽  
Alice H. de Boer ◽  
Marjolein I. Broese van Groenou
Keyword(s):  
Palliative Care ◽  
Older People ◽  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Informal Caregivers ◽  
Dementia Care ◽  
Community Dwelling ◽  
Burden Of Care ◽  
Positive Experiences

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers’ burden of care and positive experiences and explain differences in outcomes. Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

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