Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.136-152.
Publisher:
Sage
Background and objectives: Residential care facilities (RCFs) strive to enhance autonomy for people with dementia and to enhance informal care provision, although this is difficult. This study explored how RCF staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers...
(Edited publisher abstract)
Background and objectives: Residential care facilities (RCFs) strive to enhance autonomy for people with dementia and to enhance informal care provision, although this is difficult. This study explored how RCF staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers) and the physical environment, including the use of technologies. Research design and methods: A realist evaluation multiple-case study was conducted using document analyses, eight semi-structured interviews with staff members and relatives and 56 hours of observations of residents across two RCFs aiming to provide person-centred care. Realist logic of analysis was performed, involving Context-Mechanism-Outcome configurations. Findings: The behaviour, attitudes and interactions of staff members with residents and informal caregivers appeared to contribute to the autonomy of people with dementia and enhance informal care provision. The physical environment of the RCFs and the use of technologies were less relevant to enhancing autonomy and informal care provision, although they can support staff members in providing person-centred care in daily practice. Discussion and implications: The findings add to those of other studies regarding the importance of interaction between residents, staff members and informal caregivers. The findings provide insight for other RCFs on how successfully to enhance autonomy for their residents and to improve informal care provision, as well as, more broadly, how to implement person-centred care.
(Edited publisher abstract)
Subject terms:
independence, residential care, informal care, staff-user relationships, person-centred care, environmental factors;
Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary...
(Edited publisher abstract)
Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only. Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models. Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p < .05). Passive relaxation in this group was negatively associated with negative affect (r = –0.50, p = .01) and positively associated with activity-related stress (r = 0.52, p = .007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly. Conclusion: Carer’s daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one’s daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer’s life and provide sustainable support.
(Edited publisher abstract)
Background: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. Methods: Three focus
(Edited publisher abstract)
Background: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. Methods: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding. Results: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers’ experiences with (1) complex emotional and behavioural symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role. Conclusion: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.
(Edited publisher abstract)
Subject terms:
dementia, carers, carer views, loneliness, young onset dementia;
BAKKER Christian, VERBOOM Marjon, KOOPMANS Raymond T. C. M.
Journal article citation:
Journal of the American Medical Directors Association, 23(2), 2022, pp.261-265.
Publisher:
Elsevier (for the American Medical Directors Association)
Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support...
(Edited publisher abstract)
Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a centre at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia.
(Edited publisher abstract)
Subject terms:
young onset dementia, service provision, care reform, quality assurance, standards, needs, long term care;
International Psychogeriatrics, early cite January 2022, pp.1-10.
Publisher:
Cambridge Journals
Objectives:: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies. Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analysed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.
(Edited publisher abstract)
Objectives:: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies. Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analysed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.
(Edited publisher abstract)
Subject terms:
dementia, care homes, Covid-19, comparative studies, qualitative research, carer views, informal care, carers;
Disability and Rehabilitation: Assistive Technology, 17(1), 2022, pp.85-99.
Publisher:
Taylor and Francis
Place of publication:
London
Objectives: We tested the feasibility, implementation strategy and mechanism of impact of FindMyApps. FindMyApps is a tablet intervention consisting of a selection tool to help people with dementia find usable apps for self-management and meaningful activities, including training to support informal carers in employing errorless learning principles to help people with dementia learn tablet...
(Edited publisher abstract)
Objectives: We tested the feasibility, implementation strategy and mechanism of impact of FindMyApps. FindMyApps is a tablet intervention consisting of a selection tool to help people with dementia find usable apps for self-management and meaningful activities, including training to support informal carers in employing errorless learning principles to help people with dementia learn tablet and tool usage. Methods: We conducted an exploratory, pilot randomized controlled trial with a mixed-methods design. Twenty persons with mild dementia and carer dyads were randomly assigned to the FindMyApps group (n = 0), receiving either the FindMyApps training and selection tool, or a control condition (n = 10), receiving only a short tablet training. Pre- and post-test measurements at a three month follow-up, consisted of questionnaires and post-test semi-structured interviews. Results: The FindMyApps tool was mostly perceived as useful and easy to use. Persons with dementia were generally able to learn how to use the tool, though they regularly needed support from informal carers. Persons with dementia found apps through the tool, which they used regularly. Persons with dementia and informal carers were positive about the training and support they received. No significant differences were found on outcome measures of persons with dementia, but based on effect sizes FindMyApps is a promising intervention. Conclusions: Qualitative results indicate that the FindMyApps intervention has the potential to positively influence the self-management abilities and engagement in meaningful activities of people with dementia. Remarks are made to improve the intervention and recommendations are given for future effectiveness studies.
(Edited publisher abstract)
Background: The transition from home to a nursing home is a common care process experienced by older persons with dementia and their informal caregivers. This transition process is often experienced as fragmented and is paired with negative outcomes for both older persons (e.g. mortality) and informal caregivers (e.g. grief). Due to the central role that informal caregivers play, it is crucial...
(Edited publisher abstract)
Background: The transition from home to a nursing home is a common care process experienced by older persons with dementia and their informal caregivers. This transition process is often experienced as fragmented and is paired with negative outcomes for both older persons (e.g. mortality) and informal caregivers (e.g. grief). Due to the central role that informal caregivers play, it is crucial to capture their experiences throughout all phases of the transition. Methods: A secondary data analysis was conducted using an interpretative phenomenological design. A total of 24 informal caregivers of older persons with dementia, moving to a nursing home, participated in in-depth interviews. Data were collected between February 2018 and July 2018 in the Netherlands. Data were analysed using Interpretative Phenomenological Analysis. Results: The transition experiences are characterised by three paradoxes: (i) contradicting emotions during the transition process; (ii) the need for a timely transition versus the need to postpone the transition process and (iii) the need for involvement versus the need for distance. All paradoxes are influenced by the healthcare system. Conclusions: The identified paradoxes show the impact of the healthcare system and the importance of timely planning/preparing for this transition on the experiences of informal caregivers. In addition, it provides healthcare professionals insight into the thought processes of informal caregivers. Future research can use these paradoxes as a foundation to develop innovations aiming to improve the transition process from home to a nursing home for informal caregivers and, consequently, older persons.
(Edited publisher abstract)
Subject terms:
informal care, carers, dementia, service transitions, independent living, nursing homes, social transitions, carer views, qualitative research;
International Psychogeriatrics, early cite 5 April 2021,
Publisher:
Cambridge Journals
...was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects. Conclusion: The complete lockdown of Dutch nursing homes
(Edited publisher abstract)
Objectives: On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff. Design: Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes. Participants: Visitors and healthcare professionals. Intervention: Allowing visitors using local regulations based on national guidelines. Measurements: Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations. Results: National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects. Conclusion: The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.
(Edited publisher abstract)
International Journal of Geriatric Psychiatry, 36(6), 2021, pp.943-949.
Publisher:
Wiley
The effects of coronavirus disease 2019 (COVID‐19) have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer‐term effects...
(Edited publisher abstract)
The effects of coronavirus disease 2019 (COVID‐19) have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer‐term effects such as neurological damage. The International Dementia Alliance is a group of dementia specialists from six European countries and this paper is a summary of our experience of the effects of COVID‐19 on our populations. Experience from England, France, Germany, the Netherlands, Spain and Switzerland highlight the differential response from health and social care systems and the measures taken to maximise support for older people and those with dementia. The common themes include recognition of the atypical presentation of COVID‐19 in older people (and those with dementia) need to pay particular attention to the care of people with dementia in care homes; the recognition of the toll that isolation can bring on older people and the complexity of the response by health and social services to minimise the negative impact of the pandemic. Potential new ways of working identified during the pandemic could serve as a positive legacy from the crisis.
(Edited publisher abstract)
Subject terms:
dementia, Covid-19, health care, social care;
Content type:
research
Location(s):
Europe, England, France, Spain, Germany, Netherlands, Switzerland
International Journal of Geriatric Psychiatry, early cite 18 January 2021,
Publisher:
Wiley
The effects of Covid‐19 have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer‐term effects such as neurological damage...
(Edited publisher abstract)
The effects of Covid‐19 have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer‐term effects such as neurological damage. The International Dementia Alliance (IDEAL) is a group of dementia specialists from six European countries and this paper is a summary of our experience of the effects of COVID‐19 on our populations. Experience from England, France, Germany, the Netherlands, Spain and Switzerland highlight the differential response from health and social care systems and the measures taken to maximise support for older people and those with dementia. The common themes include recognition of the atypical presentation of COVID‐19 in older people (and those with dementia) the need to pay particular attention to the care of people with dementia in care homes; the recognition of the toll that isolation can bring on older people and the complexity of the response by health and social services to minimise the negative impact of the pandemic. Potential new ways of working identified during the pandemic could serve as a positive legacy from the crisis.
(Edited publisher abstract)
Subject terms:
Covid-19, dementia, older people, care homes;
Content type:
research
Location(s):
England, France, Germany, Netherlands, Spain, Switzerland