Citizens, Neighbors, and Informal Caregivers Exposed to Challenging Behaviors and Behavioral Changes in Community-Dwelling Older Adultswith Cognitive Impairment:A Review

2021 ◽  
Vol 4 (1) ◽  
Keyword(s):  
Challenging Behaviors ◽  
Informal Caregivers ◽  
Community Dwelling ◽  
Behavioral Changes

scholarly journals Implementation of an innovative web-based conference table for community-dwelling frail older people, their informal caregivers and professionals: a process evaluation

2012 ◽  
Vol 12 (1) ◽  
Author(s):  
Sarah HM Robben ◽  
Marieke Perry ◽  
Mirjam Huisjes ◽  
Leontien van Nieuwenhuijzen ◽  
Henk J Schers ◽  
...  
Keyword(s):  
Older People ◽  
Process Evaluation ◽  
Informal Caregivers ◽  
Community Dwelling ◽  
Frail Older People ◽  
Web Based

scholarly journals Assessing the Progression of Alzheimer’s Disease in Real-World Settings in Three European Countries

2021 ◽  
Vol 80 (2) ◽  
pp. 749-759
Author(s):  
Albert Lladó ◽  
Lutz Froelich ◽  
Rezaul K. Khandker ◽  
Montserrat Roset ◽  
Christopher M. Black ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Mixed Model ◽  
Primary Objective ◽  
Community Dwelling ◽  
Behavioral Changes ◽  
The Uk ◽  
State Examination ◽  
Study Inclusion

Background: There exists considerable variation in disease progression rates among patients with Alzheimer’s disease (AD). Objective: The primary objective of this observational study is to assess the progression of AD by characterizing cognitive, functional, and behavioral changes during the follow-up period between 6 and 24 months. Methods: A longitudinal prospective study with community-dwelling patients with an established clinical diagnosis of AD of mild to moderate severity was conducted in Germany, Spain and the UK. A sample of 616 patients from 69 sites was included. Results: Patients had a mean of 1.9 years (SD = 1.9) since AD diagnosis at study inclusion. Cognitive symptoms were reported to have first occurred a mean of 1.1 years (SD = 1.7) prior to AD diagnosis and 1.4 (SD = 1.8) years prior to AD treatment. Patients initially diagnosed with mild and moderate AD spent a median (95%CI) of 3.7 (2.8; 4.4) and 11.1 (6.1, ‘not reached’) years until progression to moderate and severe AD, respectively, according to the Mini-Mental State Examination (MMSE) scores. A mixed model developed for cognitive, functional, and neuropsychiatric scores, obtained from study patients at baseline and during follow-up period, showed progressive deterioration of AD patients over time. Conclusion: The study showed a deterioration of cognitive, functional, and neuropsychiatric functions during the follow-up period. Cognitive deterioration was slightly faster in patients with moderate AD compared to mild AD. The duration of moderate AD can be overestimated due to the use of retrospective data, lack of availability of MMSE scores in clinical charts and exclusion of patients at time of institutionalization.

scholarly journals The Informal Caregivers’ Viewpoint About Care Inhibitors for Community-Dwelling Elderly in an Iranian Context: A Qualitative Study

2016 ◽  
Vol 14 (3) ◽  
pp. 185-196
Author(s):  
Samaneh Pourhadi ◽  
Hamid Reza Khankeh ◽  
Reza Fadayevatan ◽  
Robab Sahaf ◽  
◽  
...  
Keyword(s):  
Qualitative Study ◽  
Informal Caregivers ◽  
Community Dwelling ◽  
Iranian Context

Community-Dwelling Patients With Dementia and Their Informal Caregivers With and Without Case Management: 2-Year Outcomes of a Pragmatic Trial

2015 ◽  
Vol 16 (9) ◽  
pp. 800.e1-800.e8 ◽  
Author(s):  
Janet MacNeil Vroomen ◽  
Judith E. Bosmans ◽  
Peter M. van de Ven ◽  
Karlijn J. Joling ◽  
Lisa D. van Mierlo ◽  
...  
Keyword(s):  
Case Management ◽  
Informal Caregivers ◽  
Pragmatic Trial ◽  
Community Dwelling

scholarly journals EXPLORING TECHNOLOGY-ENABLED ASSESSMENTS OF SYMPTOMS EXPERIENCE BY INFORMAL CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S336-S336
Author(s):  
Daniel J Schulman ◽  
Portia Singh ◽  
Mladen Milosevic ◽  
Ali Samadani
Keyword(s):  
Older Adults ◽  
Symptom Management ◽  
Information Source ◽  
Informal Caregivers ◽  
Smartphone Application ◽  
Relevant Information ◽  
Community Dwelling ◽  
Communication And Coordination ◽  
Community Dwelling Older Adults

Abstract For community-dwelling older adults with chronic conditions, effective symptom management is a determinant of quality of life. Providers often have poor knowledge of an individual’s symptoms experience, especially when contact is infrequent, leading to suboptimal symptom management. Many older adults receive frequent care and contact from family, friends, and other informal caregivers (ICGs). Subjective observation by ICGs is an underexplored information source, but faces barriers including ICG burden and lack of ICG knowledge. It is unclear what relevant information might be collected by ICG observations. We conducted a pilot evaluation of Philips CarePartners Mobile (CPM), a prototype smartphone application that provides communication and coordination support to a “circle” of ICGs assisting an older adult. CPM includes features enabling ICGs to share semi-structured observations. 19 caregivers (in 8 circles) used CPM for 12 weeks, contributing 397 observations and participating in interviews and other assessments. We performed a qualitative analysis of the observations, coding for presence of content relevant to dimensions in the UCSF Symptom Management Theory (perception of, evaluation of, and response to symptoms). Relevant content was found in 150 observations, with perception and assessment more common (141) than response (32). Common symptoms included mobility difficulty (31), fatigue (23), dizziness (21), pain (19), and confusion (18). Among observations without symptom-relevant content, many reported on overall mood (92), and reference to social activities was frequent. These results demonstrate that symptoms experience can be assessed using caregiver observations, although further work may be needed to enable caregivers to provide a comprehensive assessment.

End-of-life care research in Hong Kong: A systematic review of peer-reviewed publications

2015 ◽  
Vol 13 (6) ◽  
pp. 1711-1720 ◽  
Author(s):  
Chong-Wen Wang ◽  
Cecilia L.W. Chan
Keyword(s):  
Systematic Review ◽  
Hong Kong ◽  
End Of Life ◽  
Informal Caregivers ◽  
Physical Symptoms ◽  
Community Dwelling ◽  
Care Staff ◽  
Care Research ◽  
Research Themes ◽  
Eol Care

ABSTRACTObjective:This systematic review aimed to examine end-of-life (EoL) care research undertaken in an Eastern cultural context—Hong Kong—with the hope of better informing EoL care professionals and policy makers and providing lessons for other countries or areas that share similar EoL care challenges.Method:Eight databases were searched from their respective inception through to August of 2014. All of the resulting studies conducted in Hong Kong and relevant to EoL care or palliative care were examined. The included studies were assessed with respect to study design, care settings, participants, research themes, and major findings.Results:Some 107 publications published between 1991 and 2014 were identified. These studies were undertaken at a range of places by different professionals. Of the total, 44 were led by physicians, 36 by nurses, 17 by social workers, and 10 by other professionals. Participants included both inpatients and outpatients with different illnesses, nursing home residents, older community-dwelling adults, deceased individuals, care staff, and informal caregivers. A total of 13 research themes were identified: (1) attitudes to or perceptions of death and dying; (2) utilization of healthcare services, (3) physical symptoms or medical problems; (4) death anxiety or mental health issues; (5) quality of life; (6) advance directives or advance care planning; (7) supportive care needs, (8) decision making; (9) spirituality; (10) cost-effectiveness or utility studies; (11) care professionals' education and training; (12) informal caregivers' perceptions and experience; and (13) scale development or validation.Significance of results:While there has been a wide and diverse range of research activities in Hong Kong, EoL care services at primary care settings should be strengthened. Some priority areas for further research are recommended.

scholarly journals LONGITUDINAL CHARACTERISTICS OF INFORMAL CAREGIVERS OF COMMUNITY-DWELLING PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S450-S450
Author(s):  
Eric Jutkowitz ◽  
Joseph E Gaugler ◽  
Amal Trivedi ◽  
Lauren L Mitchell ◽  
Pedro L Gozalo
Keyword(s):  
Nursing Home ◽  
Adult Children ◽  
Functional Limitations ◽  
Informal Caregivers ◽  
Mixed Effects ◽  
Community Dwelling ◽  
Mixed Effects Models ◽  
Linear Mixed Effects Models ◽  
Linear Mixed Effects ◽  
Retirement Study

Abstract Alzheimer’s disease and related dementias (ADRD) affect >5 million Americans. Persons with ADRD experience functional limitations and often require support from informal caregivers (e.g., help with feeding). Little is known about how caregiving evolves over the full course of the disease. We used data from the Health and Retirement Study to identify incident predicted community-dwelling persons with ADRD (n=565), their informal caregivers, and the total hours of care they received in a month from predicted incidence up to 8-years post incidence. We estimated linear mixed-effects models to determine the characteristics of the person with ADRD that are associated with trajectories of caregiving hours. At predicted incidence, persons with ADRD received 120 hours of care in a month of which spouses provided 30% of care hours, adult children provided 32% of care hours, other relatives provided 12% of care hours, and non-relatives (including paid support) provided 25% of care hours. By 8-years post incidence, persons with ADRD still in the community (n=23) received 303 hours of care in a month of which spouses provided 28% of care hours, adult children provided 41% of care hours, other relatives provided 3% of care hours, and non-relatives provided 28% of care hours. Having great grandchildren and more functional limitations were associated with receiving more hours of informal care. Attrition (mortality and residing in a nursing home) was influenced by hours of care received in the previous interview and resulted in those that remained in the community being persons that required less care.

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.

Reliability, Validity and Reference Values of the Zarit Burden Interview for Assessing Informal Caregivers of Community-Dwelling Older Persons with Dementia

2000 ◽  
Vol 19 (4) ◽  
pp. 494-507 ◽  
Author(s):  
Réjean Hébert ◽  
Gina Bravo ◽  
Michel Préville
Keyword(s):  
Living Arrangement ◽  
Informal Caregivers ◽  
Depressive Mood ◽  
Community Dwelling ◽  
Short Version ◽  
Strongly Correlated ◽  
Zarit Burden Interview ◽  
Significant Difference ◽  
Two Factors ◽  
Personal Strain

ABSTRACTZarit Burden Interview (ZBI) is the most widely used instrument for assessing the burden experienced by the caregivers of persons with dementia. As part of the Canadian Study of Health and Aging, the 22-item ZBI was administered to a representative sample of 312 informal caregivers of community-dwelling subjects with dementia. The mean score was 22.4 out of 88 (sd: 16.2) and the median score was 18.5, which is far lower than those reported in previous studies using this instrument with convenience samples. There was no significant difference in the burden score according to the age, gender, living arrangement, marital status or employment status of the caregiver. The ZBI score was more strongly correlated to the depressive mood of the caregivers (r = 0.59) and the behaviour problems of the care recipients (r = 0.64) than their cognitive (r = 0.32) and functional (r = 0.31) status. Following a factor analysis, a 12-item short version of the instrument is proposed with two factors: personal strain (3 items) and role strain (9 items).

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