Care of People Living with Dementia

A special issue of Healthcare (ISSN 2227-9032).

Deadline for manuscript submissions: closed (31 December 2018) | Viewed by 44909

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Guest Editor
Burnett School of Biomedical Sciences, College of Medicine, University of Central Florida, 8829 Kastler street, Orlando, FL 32727, USA
Interests: atherosclerosis; heart failure mechanisms; cardiovascular pharmacology; cardiovascular nutrition; fatty acids; lipids and lipoproteins; oxidative stress and antioxidants; endometriosis; macrophages
* Deceased, 1 December 2020.
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Special Issue Information

Dear Colleagues,

For the foreseeable future, the number of people in the world living with dementia is expected to increase. It is important, therefore, that, in addition to the research on prevention, causes, potential drug treatments, and cures for the various types of dementia, that we also focus on providing better care for those already living with dementia. This Special Issue will address some of the key issues in care, including: Stigma; communication; environmental design to maximize capacities; quality of life, risks and governance; advanced care plans and a palliative approach to care.

Prof. Dr. Sampath Parthasarathy
Guest Editor

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Keywords

  • quality of life/care
  • rights and responsibilities
  • choice and risk
  • neglect and abuse
  • advance care planning
  • palliative care

Published Papers (9 papers)

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Research

14 pages, 205 KiB  
Article
Description of Process and Content of Online Dementia Coaching for Family Caregivers of Persons with Dementia
by Rita A. Jablonski, Vicki Winstead and David S. Geldmacher
Healthcare 2019, 7(1), 13; https://doi.org/10.3390/healthcare7010013 - 19 Jan 2019
Cited by 4 | Viewed by 5246
Abstract
Family caregivers of persons with dementia encounter resistance to care behaviors (RCBs). The purpose of this methods paper was to describe the process and content of six weekly 60-min caregiver coaching sessions delivered synchronously through an online platform to 26 family caregivers of [...] Read more.
Family caregivers of persons with dementia encounter resistance to care behaviors (RCBs). The purpose of this methods paper was to describe the process and content of six weekly 60-min caregiver coaching sessions delivered synchronously through an online platform to 26 family caregivers of persons with dementia. All session notes were analyzed for process; two coaching sessions from five purposely-selected participants were transcribed and analyzed thematically for content. The six sessions followed an overall pattern. The first session included the most teaching and goal-setting; the coaches also queried the family caregiver about the premorbid personality, work history, and interpersonal attributes of the person with dementia. Sessions two through five were the most active coaching sessions; previously suggested strategies were evaluated and tailored; caregivers also role-played with the coaches and developed scripts designed to curtail RCB. The sixth session served as a review of successful caregiver strategies and concluded the coaching relationship. Four primary content themes emerged in the coaching process: (1) education; (2) caregiver communication; (3) affirmation of the caregiver; and (4) individualized strategies. These four content categories were used throughout the coaching process and were interwoven with each other so that the participant knew why the behavior was occurring, how to verbally address it, how to use a strategy effectively, and affirmation of the result. The coaching process and content demonstrated alignment with person-centered practices and relationship-centered care. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
13 pages, 247 KiB  
Article
Comparison of Potentially Inappropriate Medications for People with Dementia at Admission and Discharge during An Unplanned Admission to Hospital: Results from the SMS Dementia Study
by Ashley Kable, Anne Fullerton, Samantha Fraser, Kerrin Palazzi, Carolyn Hullick, Christopher Oldmeadow, Dimity Pond, Andrew Searles, Kim Edmunds, John Attia and On behalf of SMS Dementia Study investigators
Healthcare 2019, 7(1), 8; https://doi.org/10.3390/healthcare7010008 - 09 Jan 2019
Cited by 14 | Viewed by 4972
Abstract
People with dementia (PWD) and cognitive impairment are particularly vulnerable to medication problems, and unplanned admission to hospital presents an opportunity to address polypharmacy, potentially inappropriate medications (PIMs) and anticholinergic burden. This study aimed to compare PIMS and other medication data for PWD [...] Read more.
People with dementia (PWD) and cognitive impairment are particularly vulnerable to medication problems, and unplanned admission to hospital presents an opportunity to address polypharmacy, potentially inappropriate medications (PIMs) and anticholinergic burden. This study aimed to compare PIMS and other medication data for PWD to determine whether these changed during hospitalization. Medications documented in patient’s records at admission and discharge were evaluated for PWD recruited to phase one of a prospective quasi-experimental pre/post-controlled trial that was conducted at two regional hospitals in NSW, Australia. The study sample included PWD or cognitive impairment having an unplanned admission to hospital. Data were collected using a purpose developed audit tool for medications and PIMs, and a Modified Anticholinergic Burden Scale. Total participants were 277, and results determined that the cognitive status of PWD is not always detected during an unplanned admission. This may make them more vulnerable to medication problems and poor outcomes. Polypharmacy and PIMS for PWD were high at admission and significantly reduced at discharge. However, PWD should be routinely identified as high risk at admission; and there is potential to further reduce polypharmacy and PIMs during admission to hospital, particularly psychotropic medications at discharge. Future studies should focus on evaluating targeted interventions designed to increase medication safety for PWD. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
12 pages, 237 KiB  
Article
Is There an Association between Physical Activity and Sleep in Community-Dwelling Persons with Dementia: An Exploratory Study Using Self-Reported Measures?
by Emma Bartfay, Paige Stewart, Wally Bartfay and Efrosini Papaconstantinou
Healthcare 2019, 7(1), 6; https://doi.org/10.3390/healthcare7010006 - 05 Jan 2019
Cited by 8 | Viewed by 5560
Abstract
Sleep disturbances are common in persons with dementia (PWD). While pharmacotherapy is widely used, non-pharmacological interventions are beginning to surface as first-line management strategies. This study sought to investigate if physical activity was associated with more favourable sleep patterns in PWD, and to [...] Read more.
Sleep disturbances are common in persons with dementia (PWD). While pharmacotherapy is widely used, non-pharmacological interventions are beginning to surface as first-line management strategies. This study sought to investigate if physical activity was associated with more favourable sleep patterns in PWD, and to compare the sleep quantity and quality between active and inactive PWD. We conducted an exploratory study to tackle these research questions. Self-reported telephone questionnaires were administered to 40 caregivers of PWD, who answered questions as proxies on behalf of their care recipient. Just over half (55%) of our participants met the criteria for being active. Walking was the most popular form of physical activity for both active and inactive PWD. Active PWD also preferred exercise classes and gardening, whereas inactive PWD favoured chair exercises. Compared to their inactive counterparts, active PWD were more likely to experience appropriate sleep quantity (p = 0.00). The active group also reported significantly better overall sleep quality (p = 0.003). Together, our findings suggest that physical activity may be associated with improved sleep in PWD. Future studies are warranted to investigate whether physical activity can be promoted as a safe and effective means to improve quality-of-life in this population. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
14 pages, 255 KiB  
Article
Exemplary Care among Chinese Dementia Familial Caregivers
by Bobo Hi Po Lau, Vivian Weiqun Lou and Karen Siu Lan Cheung
Healthcare 2018, 6(4), 141; https://doi.org/10.3390/healthcare6040141 - 05 Dec 2018
Viewed by 4145
Abstract
Objective: This study investigates the feasibility of using the Exemplary Care Scale (ECS) among Chinese dementia familial caregivers, and reports its psychometric properties. Method: Back translation was used to develop the Chinese version of ECS (C-ECS). Three hundred and ninety-seven dyads of caregivers [...] Read more.
Objective: This study investigates the feasibility of using the Exemplary Care Scale (ECS) among Chinese dementia familial caregivers, and reports its psychometric properties. Method: Back translation was used to develop the Chinese version of ECS (C-ECS). Three hundred and ninety-seven dyads of caregivers and their relatives with dementia responded to an assessment battery which included questions on care recipients’ cognition, behavioral and psychological symptoms, daily activities assistance, social support, and caregiver well-being. Results: Results of an exploratory principal component analysis revealed two subscales in the 11-item C-ECS: considerate caregiving and preserving esteem. C-ECS and its subscales demonstrated sufficient reliability, as well as criteria-related validity through its association with care recipient’s cognition and health, and caregivers’ well-being and social support. Discussion: Our findings provide preliminary support to C-ECS as a reliable and valid measure of exemplary caregiving among Hong Kong Chinese familial dementia caregivers. In the light of the increasing importance of familial care in dementia care planning, we recommend the use of this brief scale in regular caregiver assessment in research and service delivery. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
14 pages, 488 KiB  
Article
How Widely are Supportive and Flexible Food Service Systems and Mealtime Interventions Used for People in Residential Care Facilities? A Comparison of Dementia-Specific and Nonspecific Facilities
by Rachel Milte, Clare Bradley, Michelle Miller, Olivia Farrer and Maria Crotty
Healthcare 2018, 6(4), 140; https://doi.org/10.3390/healthcare6040140 - 03 Dec 2018
Cited by 9 | Viewed by 4689
Abstract
While improved mealtime practices can reduce agitation, improve quality of life, and increase food intake for people in aged care, the degree of implementation of these strategies is unknown. This study describes food service practices in residential aged care facilities, focusing on units [...] Read more.
While improved mealtime practices can reduce agitation, improve quality of life, and increase food intake for people in aged care, the degree of implementation of these strategies is unknown. This study describes food service practices in residential aged care facilities, focusing on units caring for people with dementia. An online survey was distributed to residential aged care facilities for completion by the food service manager (n = 2057). Of the 204 responses to the survey, 63 (31%) contained a dementia-specific unit. Most facilities used adaptive equipment (90.2%) and commercial oral nutritional supplements (87.3%). A higher proportion of facilities with a dementia-specific service used high-contrast plates (39.7%) than those without (18.4%). The majority of facilities had residents make their choice for the meal more than 24 h prior to the meal (30.9%). Use of high contrast plates (n = 51, 25%) and molds to reform texture-modified meals (n = 41, 20.1%) were used by one-quarter or less of surveyed facilities. There is a relatively low use of environmental and social strategies to promote food intake and wellbeing in residents, with a focus instead on clinical interventions. Research should focus on strategies to support implementation of interventions to improve the mealtime experience for residents. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
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14 pages, 218 KiB  
Article
Taking Another Look: Thoughts on Behavioral Symptoms in Dementia and Their Measurement
by Diana Lynn Woods and Kathleen Buckwalter
Healthcare 2018, 6(4), 126; https://doi.org/10.3390/healthcare6040126 - 22 Oct 2018
Cited by 9 | Viewed by 4685
Abstract
This article proposes taking another look at behavioral symptoms of dementia (BSDs) both from a theoretical perspective that informs research and practice and from a measurement perspective. We discuss why this rethinking of behaviors impacts current models of care and our ability to [...] Read more.
This article proposes taking another look at behavioral symptoms of dementia (BSDs) both from a theoretical perspective that informs research and practice and from a measurement perspective. We discuss why this rethinking of behaviors impacts current models of care and our ability to better detect outcomes from interventions. We propose that BSDs be viewed from a pattern perspective and provide some suggestions for how to identify and measure these patterns that can influence the timing and type of intervention. Evidence suggests that BSDs are complex, sequential, patterned clusters of behavior recurring repeatedly in the same individual and escalate significantly without timely intervention. However, BSDs are frequently viewed as separate behaviors rather than patterns or clusters of behaviors, a view that affects current research questions as well as the choice, timing, and outcomes of interventions. These symptoms cause immense distress to persons with the disease and their caregivers, trigger hospitalizations and nursing home placement, and are associated with increased care costs. Despite their universality and that symptoms manifest across disease etiologies and stages, behaviors tend to be underrecognized, undertreated, and overmanaged by pharmacological treatments that may pose more harm than benefit. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
15 pages, 563 KiB  
Article
Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia
by Göran Holst, Maria Johansson and Gerd Ahlström
Healthcare 2018, 6(3), 103; https://doi.org/10.3390/healthcare6030103 - 25 Aug 2018
Cited by 11 | Viewed by 4783
Abstract
The life expectancy of people with intellectual disabilities (ID) has steadily increased, which has been accompanied by an increased risk of dementia. Staff and managers are key resources for safety diagnosis since they deliver information about people with ID behavior every day. The [...] Read more.
The life expectancy of people with intellectual disabilities (ID) has steadily increased, which has been accompanied by an increased risk of dementia. Staff and managers are key resources for safety diagnosis since they deliver information about people with ID behavior every day. The aim of the present study was to explore the identification process employed by staff and managers to detect signs of suspected dementia in people with an ID within intellectual disability services (ID-services). Twenty managers and 24 staff within an ID-service were interviewed and qualitative latent content analysis was applied. A model consisting of three themes on three levels of resources for the identification process of signs of suspected dementia emerged from the analysis. On the first level was the time and continuity in the care relationship, which is crucial for identifying and responding to changes in cognitive ability that indicate dementia. On the second level, the staff identify deficiencies in their own knowledge, seek support from colleagues and managers within their workplace and, on the third level, outside their workplace. Staff and managers expressed a need for early and continuous guidance and education from specialists in dementia and primary healthcare. This finding indicates an urgent need for intervention research and digital support for staff in dementia care. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
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15 pages, 2812 KiB  
Article
Fecal Distribution Changes Using Colorectal Ultrasonography in Older People with Physical and Cognitive Impairment Living in Long-Term Care Facilities: A Longitudinal Observational Study
by Shiho Tanaka, Koichi Yabunaka, Masaru Matsumoto, Nao Tamai, Hiroshi Noguchi, Mikako Yoshida, Gojiro Nakagami, Junko Sugama and Hiromi Sanada
Healthcare 2018, 6(2), 55; https://doi.org/10.3390/healthcare6020055 - 25 May 2018
Cited by 13 | Viewed by 5201
Abstract
Nurses encounter difficulties evaluating constipation in elderly people with physical and cognitive impairment. Transabdominal ultrasonography (US) has been used to evaluate fecal impaction or fecal quality. However, it is unclear whether colorectal US can evaluate constipation symptoms in older people. Using colorectal US, [...] Read more.
Nurses encounter difficulties evaluating constipation in elderly people with physical and cognitive impairment. Transabdominal ultrasonography (US) has been used to evaluate fecal impaction or fecal quality. However, it is unclear whether colorectal US can evaluate constipation symptoms in older people. Using colorectal US, we continuously observed the elderly and clarified the relationship between patterns of fecal distribution changes and constipation symptoms in older people with physical and cognitive impairment at long-term care facilities. This study included patients aged ≥65 years with oral intake. US was performed once a day until the next defecation, and fecal hardness was assessed. US images were extracted and categorized. Then, patterns of fecal distribution changes in the colorectum were classified. Multiple logistic regression analysis was performed to examine related factors associated with a constipation pattern. Among 101 patients, US images of 95 patients were analyzed. In 74.4% of the patients, US showed continuation of reflection with acoustic shadow in the rectum, which was significantly associated with defecation on the bed. Of the patients with a continuous crescent-shaped reflection pattern (R3), 92.9% had hard stool. R3 was found to be significantly associated with a Mini-Mental State Examination score of ≤10. In most of the patients, US detected a continuation of reflection with acoustic shadow in rectal patterns, indicating fecal retention in the rectum. Point-of-care US can be used by nurses to visualize rectal fecal retention as constipation patterns in the older people with physical and cognitive impairment at long-term care facilities. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
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9 pages, 233 KiB  
Article
The Association between Quality Improvement Initiatives in Dementia Care and Supportive Psychosocial Work Environments in Nursing Homes
by Miharu Nakanishi and Maki Tei-Tominaga
Healthcare 2018, 6(2), 44; https://doi.org/10.3390/healthcare6020044 - 08 May 2018
Cited by 2 | Viewed by 4881
Abstract
Background: Quality improvement initiatives can help nursing homes strengthen psychosocial work environments. The aim of the present study was to examine the association between supportive psychosocial work environment, and professional and organizational characteristics regarding quality improvement initiatives in dementia care. Methods: [...] Read more.
Background: Quality improvement initiatives can help nursing homes strengthen psychosocial work environments. The aim of the present study was to examine the association between supportive psychosocial work environment, and professional and organizational characteristics regarding quality improvement initiatives in dementia care. Methods: A paper questionnaire survey was administered to a convenience sample of 365 professional caregivers in 12 special nursing homes in Japan. Psychosocial work environment was assessed using the Social Capital and Ethical Climate at the Workplace Scale to calculate a score of social capital in the workplace, ethical leadership, and exclusive workplace climate. Variables for quality improvement initiatives included type of home (unit-type or traditional), presence of additional benefit for dementia care, and professionalism in dementia care among caregivers evaluated using the Japanese version of the Sense of Competence in Dementia Care Staff Scale. Results: Elevated professionalism and unit-type home were significantly associated with high social capital, strong ethical leadership, and low exclusive workplace climate. The presence of dementia care benefit was not associated with any subscale of psychosocial work environment. Conclusions: Quality improvement initiatives to foster supportive psychosocial work environment should enhance professionalism in dementia care with unit-based team building of professional caregivers in special nursing homes. Full article
(This article belongs to the Special Issue Care of People Living with Dementia)
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