ABSTRACT: Sleep quality is a well-studied aspect of overall health, especially for those who have other compounded health issues like dementia. This study identified what factors affected sleep quality among Thai people with dementia who attended an outpatient psychiatric department. While we considered factors associated with poor sleep quality, we discussed the impact that family relationship specifically has on sleep quality for this population. A cross-sectional study was conducted among 80 patient–caregiver dyads. All patients were assessed by the TMSE, a neuropsychiatric assessment (Thai Mental State Examination). The PSQI (Pittsburgh Sleep Quality Index) was administered and multiple factors affecting sleep were investigated through face-to-face interviews with each patient and caregiver dyad. Interviews were conducted by a psychiatric nurse at a hospital offering outpatient psychiatric care. A chi-square test, t test, Spearman correlation, Pearson’s correlation, and logistic regression were applied to identify statistically significant associations. Overall, we found that the prevalence of poor sleep in our target population was 70%, with a high sleep score (8.14?±?4.20). Factors affecting sleep included mental health problems, night-time cough and urinary frequency, pain and fever during the night, sleep environment problems, and stimulant use (63.8%, 57.5%, 47.5%, 20%, and 7.5%, respectively). Other factors previously associated with poor sleep quality in other studies were not associated in this study. Those with perceived poor family relationships are at a 5.57 times greater risk for poor sleep than those with perceived good family relationships. On the contrary, those without mental health problems significantly decreased their overall risk for poor sleep. Further investigation into these associations should be studied. In conclusion, health-care providers are encouraged to consider the impact of family context on sleep quality for people with dementia.
SOURCE: Suvanchot K, and Pensuksan W. “Factors affecting sleep among Thai people with dementia attending an outpatient psychiatric department.” Dementia, March 1, 2019.
ABSTRACT: Registries are an important platform to which persons with dementia and other cognitive impairments can contribute to research studies. Registries also provide an opportunity for patients to stay informed about current studies. Engaging patients in registry development can increase sustainability of a registry and patient retention in clinical registries. We sought the perspective of persons with dementia and their accompanying family members about their registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes such as recruitment, data collection, and knowledge translation. Two semi-structured focus groups with persons with dementia and their family members (n?=?18) were conducted and analyzed using thematic content analysis. Participants were recruited from an existing patient registry made up of patients currently being seen in a dementia assessment clinic. The main themes identified included altruistic motives with regards to registry participation; and access to and privacy of personal health information. As electronic health records are becoming more common, understanding barriers and facilitators from the perspectives of people with dementia is essential to inform the future development of cognitive condition-related registries. The results from our focus groups identified engagement strategies and solutions to overcome perceived barriers for individuals experiencing progressive cognitive decline to participate in longitudinal registry projects.
SOURCE: Lee J, Crooks R, Pham T, and et al. ““If it helps someone, then I want to do it”: Perspectives of persons living with dementia on research registry participation.” Dementia, February 5, 2019.
ABSTRACT: Background and objectives: Advocates for dementia-friendly communities emphasize the need for the public to know about the dementias and to experience social comfort with people having dementia. This research tested a conceptual model of influences on social comfort, including two types of dementia knowledge and personal dementia fear.
Research design and methods: Data were collected from 645 Wisconsin residents through an online platform (Qualtrics®) and community outreach efforts. A hierarchical multiple regression was conducted and its results were mapped onto a figure representing the conceptual model of social comfort.
Results: Greater personhood-based knowledge (based on observations of the capabilities and perspectives of persons with dementia) and less personal dementia fear significantly predicted higher levels of social comfort, while biomedical knowledge did not. Although more personhood-based knowledge improved overall comfort regardless of the level of biomedical knowledge, people with higher levels of biomedical knowledge benefitted the most from having personhood-based knowledge.
Discussion and implications: These findings suggest that activities that promote personhood-based knowledge may enhance social comfort. These activities may be most effective for individuals who already have a high level of biomedical knowledge about people with dementia. Community members and professionals ought to strike a balance between biomedical knowledge and personhood-based knowledge, as the two together may be associated with higher levels of social comfort. This could benefit the promotion of dementia-friendly community initiatives.
SOURCE: Ebert A, Kulibert D, and McFadden S. “Effects of dementia knowledge and dementia fear on comfort with people having dementia: Implications for dementia-friendly communities.” Dementia, February 10, 2019.
ABSTRACT: Background and aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers’ understanding of dementia and improved mental health and burden.
Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer’s understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.
Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers’ knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.
Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers’ knowledge and mental health.
SOURCE: Moore K, Lee C, Sampson E, and et al. “Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review.” Dementia, February 20, 2019.
ABSTRACT: Objective: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or ‘correct’ the person and tell the ‘truth’, or tell a lie. This paper explores the concept of lying from the perspective of people living with dementia in the community and their informal/unpaid carers.
Methods: A descriptive qualitative study utilising focus groups to collect the data was conducted. Three focus group’s with a purposive sample of people with memory problems (n?=?14) and three focus group’s with informal/unpaid carers (n?=?18) were undertaken. Qualitative content analysis was used to analyse the data.
Results: All participants considered that blatant lying with the intention to deceive and do harm is not acceptable. However, telling a ‘good lie’ or ‘white lie’ to alleviate distress was in certain circumstances considered acceptable. The intention behind the ‘lie’ in their view had to be to do good, and the informal/unpaid carer telling the lie had to really ‘know the person’ and be cognisant of family preferences. Some informal/unpaid carers acknowledged that it may be acceptable for health care professionals to tell a ‘good lie’ or ‘small lie’ in certain circumstances. However, health professionals need to ‘know the person’ and need to consider informal/family caregivers’ wishes.
Conclusion: Lying was only considered acceptable in the context of knowing the person and when done with the intention not to harm or deceive, undertaken with empathy, and only for the purpose of mitigating the person living with dementia’s distress.
SOURCE: Casey D, Lynch U, and et al. “Telling a ‘good or white lie’: The views of people living with dementia and their carers.” Dementia, February 25, 2019.
BROTHERHOOD STAFF – please contact the LIBRARY if you would like full text access to this article
Produced by the librarians at the Brotherhood of St Laurence in Melbourne, Australia