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How do people with dementia make sense of their medications? An interpretative phenomenological analysis study
- Authors:
- LIM Rosemary H. M., SHARMEEN Taniya, DONYAI Parastou
- Journal article citation:
- International Journal of Geriatric Psychiatry, 37(2), 2022,
- Publisher:
- Wiley
Background: Managing medication is complex and multifaceted for people with dementia and their family carers. Despite efforts to support medication management, medication errors and medication-related hospital admissions still occur. This study investigated how people with dementia viewed and talked about their different medications and their medication taking. Methods: An interpretative phenomenological analysis (IPA) qualitative research design combining photo elicitation and in-depth interviews was used. People with a diagnosis of mild or moderate dementia took photographs of anything they viewed to be related to medication, with or without the help of family carers, over any two-day period. The photographs were then used as cues for subsequent in-depth interviews, which were analysed using IPA. Results: Twelve people with dementia were interviewed. Four themes encapsulated the experiences: (1) Medication as a lifeline, (2) Managing medications dominates daily lives and plans, (3) Struggling with uncertainty about the effectiveness of dementia medication and (4) Sense of ‘being’ and being in control. People with dementia viewed medication as a lifeline, especially donepezil, giving it preference over other daily medication they were using. Managing medications dominated the daily lives and plans of people with dementia and changed the way they viewed themselves and their life. People with dementia continually struggled with the imperceptible benefits of donepezil on their dementia, but despite such uncertainties, continued to take donepezil. Conclusions: This study provided unique insights into how people with dementia made sense of their medication. Healthcare professionals can use these insights to shape their practice around medication prescribing and advice in dementia. The findings are also useful to researchers looking to develop interventions to support medication management within the home setting. (Edited publisher abstract)
Housing and living well with dementia: from policy to practice in Greater Manchester
- Authors:
- GREATER MANCHESTER HEALTH AND SOCIAL CARE PARTNERSHIP, UNIVERSITY OF MANCHESTER
- Publisher:
- Greater Manchester Health and Social Care Partnership
- Publication year:
- 2021
- Pagination:
- 91
- Place of publication:
- Manchester
This report presents evidence and recommendations on potential interventions in housing to improve the lives of people living with dementia, with a specific focus on housing in community settings in Greater Manchester. The first part of the report consists of a rapid evidence assessment of the academic and grey literatures, including policies, research reports from nongovernmental organisations in addition to peer-reviewed research reports. The review looks at the social context of dementia; discrimination; ageism; language and terminology; inequalities; ethnicity and culture; the Covid-19 pandemic; diversity; support networks; and ageing in place. Part two provides a system-wide analysis mapping provision across Greater Manchester with a gap analysis covering medium and long-term need. Following an overview of demographic trends, the health and social care market, mainstream and specialised housing, part three of this report makes seven recommendations around: 1. accessible guidance and information; 2. integrated pathways; 3. planning ahead; 4. market-shaping; 5. combating stigma; 6. knowledge mobilisation and implementation; 7. evidence-based policy and practice. (Edited publisher abstract)
Admission to long-stay residential care and mortality among people with and without dementia living at home but on the boundary of residential care: a competing risks survival analysis
- Authors:
- CARTER L, et al
- Journal article citation:
- Aging and Mental Health, 25(10), 2021, pp.1869-1876.
- Publisher:
- Taylor and Francis
Background: Health policy in many countries is underpinned by a commitment to support dependent older people to remain in their own home for as long as possible and practicable. This study explores factors affecting both admission to long-stay residential care (LSRC) and mortality among people with and without dementia who are currently living at home with intensive formal care support. Methods: This is a cross-sectional study based on administrative data collected on 429 dependent older people in Ireland, 269 of whom were people with dementia. A cause-specific hazard model was used to investigate the hazard of admission to LSRC, while accounting for mortality as a competing risk and vice versa. Results: Admission to LSRC was higher for people with dementia relative to people without and for those receiving lower amounts of informal care. The hazard of mortality was significantly higher for older people aged 85+, whereas it was lower for individuals with a medium level of dependency relative to those with high levels of dependency. The hazard of mortality was also influenced by the amount of informal care provision. Conclusion: People with dementia are more likely to be admitted to LSRC than people without. Care for people with dementia needs to be more specialised and personal, and intensity of provision should not be equated to the number of care hours on offer. Informal care provision may help to prevent admission to LSRC. Advanced age, physical dependency and informal care provision affect mortality, raising interesting issues in relation to resource allocation. (Edited publisher abstract)
Stress, burden, and well-being in dementia and nondementia caregivers: insights from the caregiving transitions study
- Authors:
- SHEEHAN Orla C., et al
- Journal article citation:
- Gerontologist, 61(5), 2021, pp.670-679.
- Publisher:
- Oxford University Press
Background and Objectives: Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being. Research Design and Methods: Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being. Results: Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures. Discussion and Implications: Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home. (Edited publisher abstract)
Can person-centred care for people living with dementia be delivered in the acute care setting?
- Authors:
- ABBOTT Rebecca A., et al
- Journal article citation:
- Age and Ageing, 50(4), 2021, pp.1077-1080.
- Publisher:
- Oxford University Press
The need to improve care for people living with dementia in the hospital setting has long been recognised. Person-centred care has the potential to improve the experience of care for persons living with dementia and their carers, and has been shown to improve the experiences of hospital staff caring for the persons living with dementia, however it remains challenging to deliver in a time- and task-focussed acute care setting. This commentary suggests that to embed person-centred care across the hospital environment, cultural changes are needed at organisational and ward levels. In particular there needs to be: leadership that supports and advocates for workforce capacity to recognise and meet both psychological and physical needs of people living with dementia, promotion of physical environments that support familiarisation and social interactions, an inclusive approach to carers and the development of a culture of sharing knowledge and information across hierarchies and roles. An evidence-based set of pointers for service change are described which highlight institutional and environmental practices and processes that need to be addressed in order for person-centred care to become part of routine care. (Edited publisher abstract)
Challenges faced by residential aged care staff in decision-making for residents with dementia
- Authors:
- CAMERON Nadine, FETHERSTONHAUGH Deirdre, BAUER Michael
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(4), 2021, pp.1270-1283.
- Publisher:
- Sage
Care staff in residential aged care facilities (nursing homes) in Australia are obligated, under the Australian National Framework for Action on Dementia 2015–2019, to support residents to exercise choice and make decisions. Research indicates, however, that care staff are often given little guidance regarding which residents’ decisions should be supported or how to make decisions on their behalf. This lack of guidance can result in a denial of residents’ rights and inconsistent treatment by staff, placing residents’ wellbeing at risk. Through providing an analysis of the responses of staff at RACFs in Victoria and Queensland to two case scenarios, this study seeks to provide some understanding of the difficulties staff face in supporting residents’ self-determination and their own need for greater organisational support. (Edited publisher abstract)
Resilience in older people living with dementia - a narrative analysis
- Authors:
- BUGGINS Sarah-Louise, CLARKE Christopher, WOLVERSON Emma
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(4), 2021, pp.1234-1249.
- Publisher:
- Sage
Dominant discourses surrounding dementia tend to focus on narratives of loss and decline. Simultaneously, individuals living with dementia are vulnerable to being dispossessed of personal narratives supportive of identity and well-being. How older people with dementia story their experiences of resilience in this context has not previously been investigated. In response, this qualitative study utilised a narrative approach to understand lived experiences of resilience shared by eight older people living with dementia. Structural analyses indicated that participants’ personal narratives regarding resilience in living with dementia contained distinct and common phases (The Diagnosis, Initial Tasks, 'The High Point', Reflecting on Limitations and Focusing on Today) as well as a variety of dynamic characters. Overarching themes within participants’ narratives included sense of self/identity, being connected to others, sense of agency and having positive attitudes. Participants narrated richer, more active personal stories than those typically represented in dominant social discourses surrounding dementia. As such, their narratives depict lived experiences of resilience that unfolded over time in response to adversity and uncertainty and involved a dialectical process in relation to adjustment and well-being. The findings have important implications for the way resilience in living with dementia is framed and supported. (Edited publisher abstract)
COVID 19 and dementia: experience from six European countries
- Authors:
- BURNS Alistair, et al
- Journal article citation:
- 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. 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)
Use of dementia care mapping in the care for older people with intellectual disabilities: a mixed‐method study
- Authors:
- SCHAAP Feija D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(1), 2021, pp.149-163.
- Publisher:
- Wiley
Background: The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person‐centred methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID‐care. We examined the experiences of ID‐professionals in using DCM. Methods: We performed a mixed‐methods study, using quantitative data from care staff (N = 136) and qualitative data (focus‐groups, individual interviews) from care staff, group home managers and DCM‐in‐intellectual disabilities mappers (N = 53). Results: DCM provided new insights into the behaviours of clients, enabled professional reflection and gave new knowledge and skills regarding dementia and person‐centred care. Appreciation of DCM further increased after the second cycle of application. Conclusion: DCM is perceived as valuable in ID‐care. Further assessment is needed of its effectiveness in ID‐care with respect to quality of care, staff‐client interactions and job performance. (Edited publisher abstract)
Learning experiences of older volunteers in a community-based social program for people with dementia
- Authors:
- HAN Areum, BROWN Diane
- Journal article citation:
- Journal of Social Service Research, 46(2), 2020, pp.225-235.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This qualitative study aimed to explore older adults’ perspectives on volunteering in an activity-based social program for community-dwelling people with dementia called Stepping Stones. Semi-structured interviews were individually conducted with eight older adults who had volunteered in Stepping Stones. Interpretative phenomenological analysis was used to analyze interview data. Four themes related to learning experiences of older volunteers in Stepping Stones emerged. These themes include (a) self-growth and confidence in working with people with dementia; (b) understanding dementia, people with dementia, and needed support for people with dementia and their families; (c) desire not to develop dementia, while recognizing that anything can happen in old age; and (d) exercising person-centered approaches and taking on advocacy roles. Findings suggest that older volunteers gain feelings of personal growth and confidence in working with people with dementia, better understanding, and enhanced attitudes toward people with dementia through volunteering in an activity-based social program for people with dementia. Older adults will be able to fill the needs of community programs for people with dementia, while experiencing benefits from volunteering and learning in later life. Further research is needed to examine to what extent having previous dementia experiences make their experiences and learning different. (Publisher abstract)