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Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada.

https://arctichealth.org/en/permalink/ahliterature132042
Source
Health Soc Care Community. 2012 Jan;20(1):103-12
Publication Type
Article
Date
Jan-2012
Author
Meredith B Lilly
Carole A Robinson
Susan Holtzman
Joan L Bottorff
Author Affiliation
Department of Economics and Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Ontario, Canada. meredith.lilly@mcmaster.ca
Source
Health Soc Care Community. 2012 Jan;20(1):103-12
Date
Jan-2012
Language
English
Publication Type
Article
Keywords
Age Factors
Aged
British Columbia
Burnout, Professional - epidemiology
Caregivers - psychology
Dementia - therapy
Family - psychology
Family Relations
Female
Home Care Services
Humans
Independent living
Male
Middle Aged
Qualitative Research
Sex Factors
Socioeconomic Factors
Abstract
After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers' failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised.
PubMed ID
21851447 View in PubMed
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Family members' strategies when their elderly relatives consider relocation to a residential home--adapting, representing and avoiding.

https://arctichealth.org/en/permalink/ahliterature121097
Source
J Aging Stud. 2012 Dec;26(4):495-503
Publication Type
Article
Date
Dec-2012
Author
Maria Söderberg
Agneta Ståhl
Ulla Melin Emilsson
Author Affiliation
School of Social Work, Lund University, Sweden. Maria.Soderberg@soch.lu.se
Source
J Aging Stud. 2012 Dec;26(4):495-503
Date
Dec-2012
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Aged
Aged, 80 and over
Aging - psychology
Attitude
Caregivers - psychology
Communication
Decision Making
Denial (Psychology)
Disability Evaluation
Female
Guilt
Homes for the Aged
Humans
Independent Living - psychology
Interview, Psychological
Judgment
Male
Nursing Homes
Parent-Child Relations
Patient Selection
Personal Autonomy
Professional-Family Relations
Social Responsibility
Social Values
Sweden
Abstract
The aim of this article is to reveal how family members act, react and reason when their elderly relative considers relocation to a residential home. Since family members are usually involved in the logistics of their elderly relative's relocation, yet simultaneously expected not to influence the decision, the focus is on how family members experience participation in the relocation process in a Swedish context. 17 family members are included in 27 open, semi-structured interviews and follow-up contacts. Prominent features in the findings are firstly the family members' ambition to tone down their personal opinions, even though in their minds their personal preferences are clear, and secondly, the family members' ambivalence about continuity and change in their everyday lives. Family members are found to apply the adapting, the representing, or the avoiding strategy, indirectly also influencing their interaction with the care manager. Siblings applied the adapting strategy, spouses the representing strategy, while family members in the younger generation at times switched between the strategies.
PubMed ID
22939546 View in PubMed
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Nutritional treatment of aged individuals with Alzheimer disease living at home with their spouses: study protocol for a randomized controlled trial.

https://arctichealth.org/en/permalink/ahliterature124098
Source
Trials. 2012;13:66
Publication Type
Article
Date
2012
Author
Satu K Jyvakorpi
Taija Puranen
Kaisu H Pitkala
Merja H Suominen
Author Affiliation
Society for Memory Disorders Expertise in Finland, Fredriksberginkatu 2, 00240 Helsinki, Finland.
Source
Trials. 2012;13:66
Date
2012
Language
English
Publication Type
Article
Keywords
Aged
Alzheimer Disease - complications - diagnosis - physiopathology - psychology - therapy
Body Weight
Caregivers - psychology
Cognition
Counseling
Depression - etiology
Dietary Supplements
Finland
Geriatric Assessment
Hand Strength
Humans
Independent living
Malnutrition - diagnosis - etiology - physiopathology - prevention & control - psychology
Nutrition Assessment
Nutrition Therapy
Nutritional Status
Quality of Life
Research Design
Spouses - psychology
Time Factors
Treatment Outcome
Vitamin D - therapeutic use
Vitamins - therapeutic use
Abstract
Nutritional status often deteriorates in Alzheimer's disease (AD). Less is known about whether nutritional care reverses malnutrition and its harmful consequences in AD. The aim of this study is to examine whether individualized nutritional care has an effect on weight, nutrition, health, physical functioning, and quality of life in older individuals with AD and their spouses living at home.
AD patients and their spouses (aged > 65?years) living at home (n?=?202, 102?AD patients) were recruited using central AD registers in Finland. The couples were randomized into intervention and control groups. A trained nutritionist visited intervention couples 4-8 times at their homes and the couples received tailored nutritional care. When necessary, the couples were given protein and nutrient-enriched complementary drinks. All intervention couples were advised to take vitamin D 20?µg/day. The intervention lasted for one year. The couples of the control group received a written guide on nutrition of older people. Participants in the intervention group were assessed every three months. The primary outcome measure is weight change. Secondary measures are the intake of energy, protein, and other nutrients, nutritional status, cognition, caregiver's burden, depression, health related quality of life and grip strength.
This study provides data on whether tailored nutritional care is beneficial to home-dwelling AD patients and their spouses.
ACTRN 12611000018910.
Notes
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PubMed ID
22624652 View in PubMed
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The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference?

https://arctichealth.org/en/permalink/ahliterature264703
Source
Int Psychogeriatr. 2014 Dec;26(12):2011-21
Publication Type
Article
Date
Dec-2014
Author
Rita Jentoft
Torhild Holthe
Cathrine Arntzen
Source
Int Psychogeriatr. 2014 Dec;26(12):2011-21
Date
Dec-2014
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adult
Age of Onset
Caregivers - psychology
Dementia - diagnosis - epidemiology - etiology - psychology
Female
Humans
Independent Living - psychology
Longitudinal Studies
Male
Middle Aged
Needs Assessment
Norway - epidemiology
Patient Education as Topic - methods - organization & administration
Qualitative Research
Self-Help Devices - psychology
Social Support
Television
Abstract
This study was a part of a larger study exploring the impact of assistive technology on the lives of young people living with dementia (YPD). This paper focuses on one of the most useful devices, the simple remote control (SRC). The objective was to explore the reason why the SRC is significant and beneficial in the everyday lives of YPD and their caregivers.
This qualitative longitudinal study had a participatory design. Eight participants received an SRC. The range for using it was 0-15 months. In-depth interviews and observations were conducted at baseline and repeated every third month up to 18 months. A situated learning approach was used in the analysis to provide a deeper understanding of the significance and use of SRC.
Young people having dementia spend a substantial amount of time alone. Watching television was reported to be important, but handling remote controls was challenging and created a variety of problems. YPD learned to use SRC, which made important differences in the everyday lives of all family members. Comprehensive support from caregivers and professionals was important for YPD in the learning process.
The SRC was deemed a success because it solved challenges regarding the use of television in everyday lives of families. The design was recognizable and user-friendly, thus allowing YPD to learn its operation. Access to professional support and advice regarding assistive technology is vital for establishing a system for follow-up and continued collaboration to make future adaptations and adjustments.
PubMed ID
24932651 View in PubMed
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