Objective: To synthesis evidence from systematic reviews at international level to explore effective community and home based care interventions for family caregivers (FCGs), which may affect quality of life of persons with dementia (PWDs) and their FCGs in China. Methods: A systematic review of reviews was conducted. Studies were identified through Scopus, PubMed and EBSCO databases. Non-pharmacological interventions targeted on FCGs with outcome domains related to psychological health or quality of life of PWDs and/or their FCGs were within this review scope. Quality of systematic reviews was evaluated by AMSTAR. Quality of primary studies included in the systematic reviews was assessed by their internal and external validity. Results: Three systematic reviews of moderate to high quality with 74 publications were included in this systematic review. Among the primary studies, about 60% were conducted by randomized controlled design, and about 85% were carried out in high-income countries. Results at review level suggested that communication skills training, internet-based care management, coping strategy, individual behavioral management techniques were effective interventions for FCGs of PWDs. In contrast, most of the primary studies reported that community or home based interventions positively affected FCGs and/or PWDs. Those interventions included communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques; yet the effects yielded statistically insignificant in most of the trials. In particular, significant effects of community care interventions were found in 8 of 69 trials on FCGs’ psychological health, 3 of 4 trials on FCGs’ competence, 0 of 2 trials on FCGs’ quality of life, and 3 of 7 trials on PWDs’ quality of life. Combination of those community care intervention components was observed in most of the trials with significant effects. Conclusion: Communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques had positive effects on FCGs of PWDs living in the community. The combination among those intervention components and designing intervention model in FCG needs-oriented manner underpinned a potential significant effect. Given distinguished social economic contexts in urban and rural areas, implementation of community care interventions specific to FCGs in China should be handled with cautions and strengthened by policy supports to empower aging at home. / published_or_final_version / Public Health / Master / Master of Public Health

The global population is aging, and the rate of dementia is climbing. Although physical activity is thought to improve well-being, older adults often experience a decline in physical activity with age. This can be a result of physical and social barriers in their immediate environment, which can be exacerbated in winter. Through a photovoice study, interview, and a group presentation/discussion, this research aims to bring issues associated with aging-in-place with dementia into planning discussions. Findings from this research suggest snow and ice on sidewalks are significant barriers for individuals with dementia, and that intersections are distracting and confusing. Suggestions include creating opportunities for mental and physical stimulation (e.g. using color to increase distinctness), providing particular individual physical characteristics (e.g. reducing the number of curbs or painting curbs so they are more visible), improving wider urban design characteristics (e.g. maintaining a cleared sidewalk network), and increasing awareness in the community. / October 2015

Background: Research has demonstrated that adults with a moderate dementia can benefit from the introduction of a memory book to improve the quality of their conversational content. However, previous investigations in the area have focussed on low-tech alternative and augmentative communication aids. Few studies have investigated how digital media can be incorporated into therapy when working with people living with dementia. The present study addresses this gap in the literature by investigating the effects of a digital memory book on the quality and quantity of conversations in adults with mild to moderate dementia. Method: A single-subject multiple baseline design across behaviours with replication across four participants was used in this investigation. Four English speaking adults with a mild to moderate dementia and four of their family members participated in the study. The researcher developed a digital memory book using the Pictello™ application on an Apple iPad with the help of the participant and their family/whānau. Photos and statements were chosen in relation to these three conversational topics: Daily Life, Family, and Myself. During baseline and treatment sessions, the researcher met with each participant to conduct and record a five-minute conversation based on the three conversational topics. During treatment sessions, the researcher used the digital memory book to establish the effect of the memory book on the participants’ conversational utterances. Each conversation was transcribed verbatim by the researcher and analysed and coded for Memory Book Statements, Novel On-Topic Statements, Ambiguous Utterances, Unintelligible Utterances, Perseverative Utterances, Error Statements, Other Utterances, Partner Prompts, Partner Statements, Partner Questions, and Partner Other statements. A research assistant independently transcribed 20% of the transcripts and coded 20% of the conversations to establish the inter-observer agreement for the transcription and coding. Results: Visual analysis of the total-on-topic statements revealed a lack of evidence of a clear difference between the baseline and treatment phases across all the behaviours for each of the four participants. All four participants increased their total-on-topic statements with family members during an initial baseline session without the digital memory book to a follow-up session involving the digital memory book. Conclusion: Although the use of a digital memory book did not improve the quality and quantity of conversations in adults with mild to moderate dementia during conversations with the researcher, further research in the area is warranted. Future studies could focus on individuals with moderate or more severe dementia and individuals who are familiar with using digital media in their daily lives. Research could also focus more on the use of digital memory books during conversations with family members.

Distress proneness, as indicated by the personality trait neuroticism, has been linked with increased rates of a variety of age-related cognitive pathologies. The current study examined changes in cognitive ability over a six-year period in a 66-year-old cohort of aging individuals classified as highly distress prone. The sample population was drawn from the Swedish National study of Aging and Care database. The results of this paper indicate that distress proneness did not significantly impact cognitive decline over a six-year period in old age. Accordingly, several important distinctions should be made in order to understand why these results differ from those of previous reports concerned with similar topics.

<p><bold>Background</bold>: Family caregivers for a parent with dementia often experience negative emotional consequences. These caregivers may also be at risk for compassion fatigue, a concept that was introduced to the health care community as feelings of anger, inefficacy, apathy, and depression resulting from a caregiver's inability to cope with devastating stress. Compassion fatigue was first observed in nurses and later in other caring professionals such as social workers and psychologists and the definition was adapted to focus on prolonged exposure to suffering as one of the primary causes.</p><p>Although compassion fatigue has not been studied in family caregivers providing care at home, their experiences, particularly those of adult daughter caregivers for parents with dementia, appear to create a foundation for developing compassion fatigue. For this reason, it was important to investigate compassion fatigue in this growing population of caregivers and this dissertation explored compassion fatigue in daughter caregivers for parents with dementia. The dissertation aims were to 1) identify common themes across the literature on compassion fatigue and to apply these themes and the existing model of compassion fatigue to informal caregivers for family members with dementia, 2) analyze secondary data from Project ASSIST to substantiate a need for further study of compassion fatigue in adult daughter caregivers of a parent with dementia, 3) explore the feasibility of studying compassion fatigue in family caregivers, and 4) explore compassion fatigue and the contributing factors and potential outcomes of compassion fatigue in adult daughter caregivers for parents with dementia.</p><p><bold>Methods</bold>: The dissertation consisted of three studies. The first study, a review of the literature addressed aim 1 of the dissertation as I applied the established model of compassion fatigue to family caregivers. The second study, a secondary analysis pilot study addressed aim 2 and aim 3 of the dissertation study. The third study of the dissertation was a qualitative study exploring the concept of compassion fatigue in daughter caregivers for parents with dementia. </p><p><bold>Conclusions</bold>: The literature review found evidence to support the components of the established model of compassion fatigue and findings suggested additional work was needed on the concept of compassion fatigue in family caregivers. Findings from the secondary analysis provided support for more in-depth exploration of the concept of compassion fatigue in family caregivers. Findings from the larger qualitative study provided support for many of the factors related to compassion fatigue, but also suggested revisions to the established model of compassion fatigue were needed. A revised model was created based upon the findings from this dissertation.</p><p>The revised model incorporates the contributing factors and moderators of compassion fatigue found in family caregivers and the model also proposes revised characteristics and outcomes of compassion fatigue. Findings from this dissertation also suggest new areas for research, specifically with all dementia caregivers and caregivers who do not utilize formal or informal support. Additional value from this dissertation derives from the detailed explanation of previous relationship quality, empathy, and caregiving experience. This dissertation is one of a few qualitative studies on compassion fatigue to provide this level of detail and serves to anchor future research on compassion fatigue in all family caregivers.</p> / Dissertation

This research explores the use of haiku poetry to connect with persons with dementia. The happenings during two one-hour sessions provide the main focus for this study. These sessions were part of an ongoing spiritual care program on the secure dementia unit of a long-term care facility. The sessions were co-facilitated by the chaplain who leads the ongoing program, and by myself as both guest poet and researcher. Haiku were used as prompts to reminiscence. Words and phrases from the stories that were spoken during the session became the building blocks for creating collaborative haiku within the group setting. “Inferences all over” was spoken by a person with severe dementia and became a part of one of the collaborative haiku. This comment is remarkable for its association to poetry where the words on the page often only hint indirectly at a deeper meaning, and for its association to spirituality where the stories we tell often only hint at our deeper truth. The ambiguity around what is evident and what is implied paradoxically invites connection. The first chapter of this thesis, Beginning, describes the format of a haiku session where building connection is the primary intention. It also explores issues around the creative arts. “Inferences all over” also speaks to the hermeneutic phenomenological approach of this thesis, where the stories speak for themselves. These stories appear in the second chapter entitled During, along with insights gleaned from interviews. “Inferences all over” well describes the third chapter, After, where I reflect on my experiences as a participant in this research, and where I detail some of the ripples of this study into the dementia care, haiku, and educational communities. “Their capacity to delight” in the thesis title was spoken by the chaplain who developed the spiritual care program. Her belief in the possibility of connection with persons with dementia forms the bedrock of the program—where hospitality invites connection and validation affirms their responses. This capacity has implications for all teaching—formal as well as informal—as it invites learning as an experience to enjoy rather than endure. / Thesis (Master, Education) -- Queen's University, 2008-04-24 09:27:30.949

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The aim of this study was to explore how caregivers caring for severely demented patients experience ethical conflict situations. Feeding patients in a late state of dementia was chosen as focus. Special attention was paid to analyses of the caregivers' experiences with regard to their feelings, use of force, interpretations of the patients' behaviour and their ethical reasoning. The study was carried out in five separate parts, presented as five papers. A phenomenological - hermeneutic approach was consistent. Personal interviews, a projective defence mechanism test, the Meta Contrast Technique and an analysis of patient/caregiver behaviour as shown in video taped feeding sessions were the methods used. Study participants were forty-one caregivers in psychogeriatric care, registered nurses, licensed practical nurses and nurses' assistants. The result indicated that, when facing ethical decisions the caregivers were caught in a double bind conflict due to the contradicting ethical demands "Keep the patient alive!" and "Don't cause the patient suffering!". The difficulty to interpret what the patients experienced and the impossibility to know for sure what actions would be right or wrong were sources of anxiety. They defined force feeding individually, yet a pattern was found. Some caregivers defined force feeding according to the amount of persuasiveness or violence they had to perform. Some regarded force feeding from a patient wish perspective. A majority combined the two dimensions. The caregivers' ethical reasoning showed that their decision making was to be regarded as a process grounded on ethical rules. Interdependence in the relation caregiver/patient made them develop their reasoning in a direction of existential reasoning. / <p>S. 1-38: sammanfattning, s. 39-113: 5 uppsatser</p> / digitalisering@umu

Older adults who maintain their cognitive skills and abilities are able to live more independently than those whose skills have deteriorated. The costs (money, time, personnel) associated with providing cognitive stimulation programs to residents in long-term care homes often prohibit the delivery of these programs. The present study explored the efficacy of using volunteers to administer a stimulation program in two long-term care homes. The program focused on stimulating reasoning, attention, and memory abilities using uncomplicated, pen-and-paper exercises. Thirty-six resident participants and 16 volunteer participants were randomly assigned to one of two parallel groups, either the control or stimulation group. For eight weeks, three times each week, control group participants met for standard “friendly visits” (casual conversation between a resident and volunteer) and stimulation group participants met to work through a variety of exercises meant to stimulate the cognitive abilities of residents. Results were analyzed using a 2-way ANOVA and indicated statistically significant Group x Time interactions for Verbal Memory, Non-Verbal Memory, Learning, and in a screening test for verbal fluency. Volunteers completed a post-study questionnaire which indicated that the volunteers in the stimulation group found their skills-based interactions more stimulating for residents. Therefore this study demonstrates that a volunteer-administered cognitive stimulation program can provide measurable gains in the cognitive abilities of older adults. Further studies concerning the role of volunteers in the maintenance of the cognitive abilities of older adults are recommended. / Thesis (Master, Education) -- Queen's University, 2014-05-29 07:07:01.042

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