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1.
BMJ Open ; 14(7): e082988, 2024 Jul 16.
Article in English | MEDLINE | ID: mdl-39013656

ABSTRACT

INTRODUCTION: COVID-19 vaccination is crucial for vulnerable people with underlying chronic conditions such as Alzheimer's disease and related dementias (ADRD) and mild cognitive impairment (MCI). These individuals face unique challenges, including higher risk of COVID-19, difficulties in adopting preventive behaviours and vaccine hesitancy due to concerns about adverse reactions. Therefore, efforts to promote vaccination, including boosters tailored to the currently circulating virus, are essential for people with ADRD/MCI. OBJECTIVE: The primary purpose of this study protocol is to conduct a comprehensive analysis of COVID-19 vaccination coverage and adverse reactions among individuals with ADRD/MCI in comparison to those without ADRD/MCI. Additionally, the proposed study aims to investigate the impact of social determinants of health on COVID-19 vaccination and vaccine hesitancy in individuals with ADRD/MCI. METHODS AND ANALYSIS: A retrospective cross-sectional study will be conducted utilising data from the All of Us (AoU) Researcher Workbench. Relevant data fields are extracted from sources including demographic information, COVID-19 Vaccine Survey, Basic Survey, Health Access & Utilization, Social Determinants of Health, and Electronic Health Record (EHR) data. Data on vaccination, adverse reactions and vaccine hesitancy will be collected through COVID-19 vaccine survey questionnaires. Propensity score matching and binary logistic regression will be applied to assess the vaccination rates and vaccine hesitancy, while controlling for demographic characteristics and social determinants of health factors. ETHICS AND DISSEMINATION: This study protocol received approval from the Institutional Review Board at Florida State University (STUDY00004571). Results will be disseminated through publication in peer-reviewed journals and presented at scientific conferences.


Subject(s)
COVID-19 Vaccines , COVID-19 , Social Determinants of Health , Vaccination Hesitancy , Humans , Cross-Sectional Studies , Retrospective Studies , COVID-19/prevention & control , COVID-19/epidemiology , COVID-19/psychology , Vaccination Hesitancy/psychology , Vaccination Hesitancy/statistics & numerical data , COVID-19 Vaccines/adverse effects , COVID-19 Vaccines/administration & dosage , SARS-CoV-2 , Vaccination Coverage/statistics & numerical data , Cognitive Dysfunction/prevention & control , Alzheimer Disease/psychology , Dementia/psychology , Research Design , Male , Female
2.
BMC Geriatr ; 24(1): 602, 2024 Jul 15.
Article in English | MEDLINE | ID: mdl-39009993

ABSTRACT

BACKGROUND: Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. METHODS: This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. RESULTS: The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79-5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01-0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. CONCLUSION: Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings.


Subject(s)
Alzheimer Disease , Caregivers , Dementia , Psychological Distress , Quality of Life , Humans , Female , Male , Caregivers/psychology , Uganda/epidemiology , Alzheimer Disease/psychology , Alzheimer Disease/epidemiology , Cross-Sectional Studies , Middle Aged , Quality of Life/psychology , Adult , Aged , Dementia/psychology , Dementia/epidemiology , Stress, Psychological/epidemiology , Stress, Psychological/psychology , Depression/psychology , Depression/epidemiology , Aged, 80 and over
3.
J Law Med ; 31(2): 386-402, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38963252

ABSTRACT

Euthanasia in the form of Voluntary Assisted Dying (VAD) is legal in all Australian States, but current eligibility criteria preclude access to people with dementia. This article discusses Australian VAD eligibility criteria that are problematic for people with dementia: (1) time until death within 12 months, (2) decision-making capacity for VAD, and (3) determination of intolerable suffering. Legislation in the Netherlands allows VAD for people with dementia. The challenges and philosophical issues raised by such cases are explored. It is proposed that the unique nature of dementia in its various forms warrants the formulation of dementia-specific VAD eligibility criteria. A case could be brought to challenge the denial of access to VAD of people with dementia on the basis that their exclusion is discriminatory and an abuse of human rights. If such a challenge was successful, it could form a common law precedent to allow people with dementia access to VAD.


Subject(s)
Dementia , Humans , Dementia/psychology , Australia , Euthanasia, Active, Voluntary/legislation & jurisprudence , Suicide, Assisted/legislation & jurisprudence , Netherlands
4.
BMJ Open ; 14(6): e085051, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38951009

ABSTRACT

OBJECTIVES: This review identifies and examines theoretical approaches (components and objectives) to person-centred dementia care in order to obtain a better understanding of what is meant by the concept of person-centred dementia care. DESIGN: Following the approach of Whittemore and Knafl, an integrative literature review was conducted to answer the following questions: (1) Which theoretical approaches to person-centred dementia care have been published? (2) What are the components of the theoretical approaches to person-centred dementia care thus identified, and which objectives can be identified? DATA SOURCES: MEDLINE (via PubMed), CINAHL (via EBSCO) and PsycINFO (via EBSCO) were searched through to 26 April 2021. ELIGIBILITY CRITERIA: We included any kind of published literature that describes theoretical approaches to person-centred dementia care and that was written in German or English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data. Data were pooled using a data extraction form developed by the Joanna Briggs Institute. A qualitative content analysis was conducted. RESULTS: The analysis revealed heterogeneous perspectives within the identified approaches to person-centred dementia care. Statements pertaining to the components and objectives could be assigned to three different subcategories (microlevel, macrolevel and application level). This analysis enabled an enhanced understanding of how person-centred dementia care is currently described and whether and how the theoretical approaches differ in terms of their orientations and their focus on the individual and/or on sociality, which allows conclusions regarding the underlying conceptual idea of personhood. CONCLUSIONS: There is a clear challenge for future research to overcome the dominance of the focus on the individual and to consider aspects of sociality to be at least equally important. This is needed in order to understand dementia as a multifaceted phenomenon that demands a differentiated consideration of theoretical notions of how to understand personhood in this context.


Subject(s)
Dementia , Patient-Centered Care , Humans , Dementia/therapy , Dementia/psychology
7.
Age Ageing ; 53(7)2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38994589

ABSTRACT

BACKGROUND: Dementia encompasses neurodegenerative disorders that account for a global estimated healthcare expenditure of 1.3 trillion US dollars. In Australia, one in 12 people aged ≥65 has a diagnosis of dementia and it is the second leading cause of death. Paramedics play a crucial role in person-centred dementia care, particularly in the community. While consensus has been established on paramedicine's integration into interdisciplinary care teams, there remains a lack of clarity regarding the paramedic role in dementia care. OBJECTIVE: This study aimed to examine and report paramedic interactions with people living with dementia in the out-of-hospital setting. DESIGN AND SETTING: This was a scoping review study of paramedics and people living with dementia within the out-of-hospital setting. METHODS: This study was guided by the Joanna Briggs Institute (JBI) scoping review framework. Databases were searched without date limits, up to 4 April 2023. These encompassed OVID Medline, CINAHL, Scopus, APA PsycInfo and OVID Embase. Articles were included if they were primary, peer-reviewed studies in English and reporting on paramedic-specific interactions with people living with dementia in the out-of-hospital setting. Data extraction was performed based on study setting, design, population and key findings. RESULTS: Twenty-nine articles were included in the thematic analysis. Four themes emerged: need for training, patterns of attendances, patterns of documentation and the integrative potential of paramedicine. Paramedics reported feeling ill-equipped and unprepared in caring for patients living with dementia due to challenges in assessment and management of caregiver tensions. They were often called as a last resort due to poor service integration and a lack of alternative care pathways. Despite high conveyance rates, there was low incidence of paramedic interventions initiated. Underdocumentation of dementia and pain was found. CONCLUSION: Emergency ambulance conveyance of people living with dementia is a surface reaction compounded by a lack of direction for paramedics in the provision of out-of-hospital care. There is a pressing need for establishment of research and educational priorities to improve paramedic training in dementia-specific skillsets.


Subject(s)
Allied Health Personnel , Dementia , Emergency Medical Services , Humans , Dementia/therapy , Dementia/psychology , Dementia/diagnosis , Emergency Medical Technicians , Aged , Professional Role , Paramedics
8.
PLoS One ; 19(7): e0306447, 2024.
Article in English | MEDLINE | ID: mdl-38995919

ABSTRACT

BACKGROUND: Currently, there is no curative treatment for dementia. The implementation of preventive measures is of great importance. Therefore, it is necessary to identify and address individual and modifiable risk factors. Social isolation, defined through social networks, is a factor that may influence the onset and progression of the disease. The networks of older people are mostly composed of either family or friends. The aim of this study is to examine the influence of social isolation and network composition on cognition over the course of 12 months in people with cognitive impairment. METHODS: Data basis is the multicentre, prospective, longitudinal register study 'Digital Dementia Registery Bavaria-digiDEM Bayern'. The degree of social isolation was assessed using the Lubben Social Network Scale- Revised (LSNS-R) and the degree of cognitive impairment using the Mini Mental State Examination (MMSE), conducted at baseline and after 12 months. Data were analysed using pre-post ANCOVA, adjusted for baseline MMSE, age, gender, education, living situation and Barthel-Index. RESULTS: 106 subjects (78.9 ± 8.2 years; 66% female) were included in the analysis. The mean MMSE score at baseline was 24.3 (SD = 3.6). Within the friendship subscore, risk for social isolation was highly prevalent (42.5%). Though, there was no difference between individuals with higher/ lower risk of social isolation within the friendship-network after adjusting for common risk factors in cognitive decline over time, F (1,98) = .046, p = .831, partial η2 = .000. CONCLUSION: The results of this study showed that the risk of social isolation from friends is very high among people with cognitive impairment. However, social isolation does not appear to have a bearing influence on the course of cognition. Nevertheless, it is important for people with cognitive impairment to promote and maintain close social contacts with friends.


Subject(s)
Cognitive Dysfunction , Dementia , Registries , Social Isolation , Social Networking , Humans , Female , Male , Aged , Cognitive Dysfunction/epidemiology , Dementia/epidemiology , Dementia/psychology , Aged, 80 and over , Social Isolation/psychology , Prospective Studies , Longitudinal Studies , Risk Factors , Germany/epidemiology , Mental Status and Dementia Tests , Social Support
9.
Age Ageing ; 53(7)2024 Jul 02.
Article in English | MEDLINE | ID: mdl-39003234

ABSTRACT

BACKGROUND: Stimulating activities are associated with a decreased risk of dementia. However, the extent to which this reflects a protective effect of activity or non-participation resulting from dementia is debated. We investigated the association of stimulating leisure-time activity in late adulthood with the risk of dementia across up to two decades' follow-up. METHODS: We used data from five prospective cohort studies from Finland and Sweden. Mental, social, outdoor, consumptive and physical leisure-time activities were self-reported. Incident dementia was ascertained from clinical diagnoses or healthcare and death registers. Cox regression was used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs). RESULTS: Of the 33 263 dementia-free individuals aged ≥50 years at baseline, 1408 had dementia during a mean follow-up of 7.0 years. Active participation in mental (HR: 0.52, 95% CI: 0.41 to 0.65), social (HR: 0.56 95% CI: 0.46 to 0.72), outdoor (HR: 0.70, 95% CI: 0.58 to 0.85), consumptive (HR: 0.67, 95% CI: 0.53 to 0.94) and physical (HR: 0.62, 95% CI: 0.51 to 0.75) activity, as well as variety (HR: 0.54, 95% CI: 0.43 to 0.68) and the overall frequency of activity (HR: 0.41, 95% CI: 0.34 to 0.49) were associated with a reduced risk of dementia in <10 years' follow-up. In ≥10 years' follow-up all associations attenuated toward the null. CONCLUSION: Stimulating leisure-time activities are associated with a reduced risk of dementia in short-term but not long-term follow-up. These findings may reflect a reduction in leisure-time activity following preclinical dementia or dilution of the association over time.


Subject(s)
Dementia , Leisure Activities , Humans , Dementia/epidemiology , Dementia/prevention & control , Dementia/diagnosis , Dementia/psychology , Male , Female , Aged , Sweden/epidemiology , Finland/epidemiology , Middle Aged , Risk Factors , Prospective Studies , Time Factors , Protective Factors , Risk Assessment , Incidence
10.
J Med Internet Res ; 26: e59546, 2024 Jul 16.
Article in English | MEDLINE | ID: mdl-39012679

ABSTRACT

BACKGROUND: Digital dementia is a term that describes a possible decline in cognitive abilities, especially memory, attributed to the excessive use of digital technology such as smartphones, computers, and tablets. This concept has gained popularity in public discourse and media lately. With the increasing use of social media platforms such as Twitter (subsequently rebranded as X), discussions about digital dementia have become more widespread, which offer a rich source of information to understand public perceptions, concerns, and sentiments regarding this phenomenon. OBJECTIVE: The aim of this research was to delve into a comprehensive content and sentiment analysis of Twitter discussions regarding digital dementia using the hashtag #digitaldementia. METHODS: Retrospectively, publicly available English-language tweets with hashtag combinations related to the topic of digital dementia were extracted from Twitter. The tweets were collected over a period of 15 years, from January 1, 2008, to December 31, 2022. Content analysis was used to identify major themes within the tweets, and sentiment analysis was conducted to understand the positive and negative emotions associated with these themes in order to gain a better understanding of the issues surrounding digital dementia. A one-way ANOVA was performed to gather detailed statistical insights regarding the selected tweets from influencers within each theme. RESULTS: This study was conducted on 26,290 tweets over 15 years by 5123 Twitter users, mostly female users in the United States. The influencers had followers ranging from 20,000 to 1,195,000 and an average of 214,878 subscribers. The study identified four themes regarding digital dementia after analyzing tweet content: (1) cognitive decline, (2) digital dependency, (3) technology overload, and (4) coping strategies. Categorized according to Glaser and Strauss's classifications, most tweets (14,492/26,290, 55.12%) fell under the categories of wretched (purely negative) or bad (mostly negative). However, only a small proportion of tweets (3122/26,290, 11.86%) were classified as great (purely positive) or swell sentiment (mostly positive). The ANOVA results showed significant differences in mean sentiment scores among the themes (F3,3581=29.03; P<.001). The mean sentiment score was -0.1072 (SD 0.4276). CONCLUSIONS: Various negative tweets have raised concerns about the link between excessive use of digital devices and cognitive decline, often known as digital dementia. Of particular concern is the rapid increase in digital device use. However, some positive tweets have suggested coping strategies. Engaging in digital detox activities, such as increasing physical exercise and participating in yoga and meditation, could potentially help prevent cognitive decline.


Subject(s)
Dementia , Social Media , Social Media/statistics & numerical data , Humans , Dementia/psychology , Retrospective Studies , Emotions
11.
BMC Geriatr ; 24(1): 579, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965464

ABSTRACT

BACKGROUND: With an increasing proportion of older adults and the associated risk of Alzheimer's Disease and Related Dementias (ADRD) around the globe, there is an urgent need to engage in ADRD risk reduction efforts. African American (AA) older adults in the U.S. are disproportionally impacted by ADRD compared to other races and ethnicities. Mindful walking integrates two potentially protective factors of ADRD by elevating mindfulness and physical activity (i.e., walking), resulting in a synergistic behavioral strategy that is feasible and safe for older adults. However, the efficacy of applying this intervention for cognitive health outcomes has not been evaluated using experimental designs. METHODS: This paper documents the goal and protocol of a community-based, mindful walking randomized controlled trial to examine the short- and longer-term efficacy on cognitive and other health-related outcomes in ADRD at-risk AA older adults. The study outcomes include various brain health determinants, including cognitive function, quality of life, psychological well-being, physical activity, mindfulness, sleep, and overall health status. In addition, the estimated costs of program implementation are also collected throughout the study period. This study will recruit 114 older adults (ages 60+ years) with elevated ADRD risk from the Midlands region of South Carolina. Older adults are randomly assigned to participate in 24 sessions of outdoor mindful walking over three months or a delayed mindful walking group (n=57 in each group). Participants in both groups follow identical measurement protocols at baseline, after 12 weeks, after 18 weeks, and after 24 weeks from baseline. The outcome measures are administered in the lab and in everyday settings. Costs per participant are calculated using micro-costing methods. The eliciting participant costs for mindful walking engagement with expected results are reported using the payer and the societal perspectives. DISCUSSION: This study will generate evidence regarding the efficacy of mindful walking on sustaining cognitive health in vulnerable older adults. The results can inform future large-scale effectiveness trials to support our study findings. If successful, this mindful walking program can be scaled up as a low-cost and viable lifestyle strategy to promote healthy cognitive aging in diverse older adult populations, including those at greatest risk. TRIAL REGISTRATION: ClinicalTrials.gov number NCT06085196 (retrospectively registered on 10/08/2023).


Subject(s)
Black or African American , Dementia , Mindfulness , Walking , Humans , Aged , Walking/physiology , Black or African American/psychology , Dementia/ethnology , Dementia/prevention & control , Dementia/psychology , Male , Mindfulness/methods , Female , Cognition/physiology , Middle Aged
12.
BMC Geriatr ; 24(1): 570, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38956490

ABSTRACT

INTRODUCTION: Frailty is an age-related condition with increased risk for adverse health outcomes. Assessing frailty according to the Clinical Frailty Scale (CFS) based on data from medical records is useful for previously unassessed patients, but the validity of such scores in exclusively geriatric populations and in patients with dementia is relatively unknown. METHODS: Patients admitted for the first time to one of two geriatric wards at Örebro University hospital between January 1st - December 31st, 2021, were included in this study if they had been appointed a CFS-score by anamnestic interview (CFSI) at admission. CFS scores based on medical records (CFSR) were appointed by a single medical student, who was blinded to the CFSI score. Score-agreement was evaluated with quadratic weighted Cohen's kappa (κ). RESULTS: In total, 145 patients between the age of 55-101 were included in the study. The CFSR and CFSI scores agreed perfectly in 102 cases (0.7, 95% CI 0.65-0.77). There was no significant difference regarding age, sex, comorbidity, or number of patients diagnosed with dementia between the patients with complete agreement and the patients whose scores did not agree. Agreement between the scores was substantial, κ = 0.66, 95% CI 0.53-0.80. CONCLUSIONS: CFS scores based on information from medical records can be generated with substantial agreement to CFS scores based on in-person anamnestic interviews. A dementia diagnosis does not influence the agreement between the scores. Therefore, these scores are a useful tool for assessing frailty in geriatric patients who previously lack a frailty assessment, both in clinical practice and future research. The results support previous findings, but larger studies are warranted.


Subject(s)
Frail Elderly , Frailty , Geriatric Assessment , Humans , Male , Aged , Female , Cross-Sectional Studies , Frailty/diagnosis , Frailty/epidemiology , Aged, 80 and over , Geriatric Assessment/methods , Middle Aged , Medical Records , Interviews as Topic/methods , Dementia/diagnosis , Dementia/epidemiology , Dementia/psychology
13.
BMC Geriatr ; 24(1): 593, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38992599

ABSTRACT

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.


Subject(s)
Dementia , Volunteers , Humans , Dementia/therapy , Dementia/psychology , Male , Female , Aged , Aged, 80 and over , Volunteers/psychology , Prospective Studies , Caregivers/psychology , Patient Acceptance of Health Care/psychology , Quality of Life/psychology , Middle Aged
14.
Int J Older People Nurs ; 19(4): e12629, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38978224

ABSTRACT

AIMS: We aimed to ascertain the content validity of an instrument to assess health and social care professionals' knowledge and attitudes towards later-life intimacy and sexuality (HSCP-KALLIS). BACKGROUND: For older adults, intimacy and sexuality are important in maintaining their quality of life and well-being. However, addressing these needs remains challenging for health and social care professionals, particularly for nursing staff providing 24-h direct care to older people with dementia or those identified as lesbian, gay, bisexual, transgender, intersex or queer/questioning individuals. Existing instruments assessing knowledge and attitudes towards later-life intimacy and sexuality are dated and fail to adequately address dementia and sexual diversity. DESIGN: A two-round modified Delphi study was conducted. METHODS: Initially, 79 knowledge and attitude items were generated through an integrative review. Panellists rated each item's clarity and importance using online questionnaires. The content validity index for the individual and overall items was calculated. The panellists' written feedback-along with their knowledge level of later-life intimacy and sexuality-was obtained. RESULTS: Panellists included health and social care professionals (n = 9); healthcare-related educators (n = 2); researchers specialising in later-life intimacy, sexuality, dementia care and sexual diversity support (n = 7); and family carers of older people with dementia (n = 2). The instrument was revised based on the feedback received. The components of dementia, LGBTIQ+ and the provision of sex worker services in healthcare settings were highlighted by the panellists. Notably, 46 knowledge and 40 attitude items fulfilled the consensus criteria for clarity and importance. CONCLUSIONS: Acceptable content validity was established for the knowledge and attitude items. Further research is required to establish the psychometric properties of the HSCP-KALLIS. This instrument has implications for clinical practice-specifically, in nursing care-by addressing issues to improve awareness regarding later-life intimacy and sexuality in healthcare settings. IMPLICATIONS FOR PRACTICE: The HSCP-KALLIS has the potential to inform the educational needs regarding knowledge and attitudes towards later-life intimacy and sexuality for health and social care professionals, specifically nursing staff. The findings of the HSCP-KALLIS can be used for the development of competencies for later-life intimacy and sexuality, establishing policies and guidelines to support older adults' intimacy and sexuality needs in health care settings.


Subject(s)
Delphi Technique , Health Knowledge, Attitudes, Practice , Sexuality , Humans , Female , Male , Sexuality/psychology , Surveys and Questionnaires , Aged , Middle Aged , Health Personnel/psychology , Attitude of Health Personnel , Adult , Dementia/nursing , Dementia/psychology , Quality of Life/psychology
15.
Age Ageing ; 53(7)2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38970547

ABSTRACT

BACKGROUND: Based on observational studies and randomised controlled trials (RCTs), the benefit-harm balance of antihypertensive treatment in older adults with dementia is unclear. OBJECTIVE: To assess whether discontinuing antihypertensive treatment reduces neuropsychiatric symptoms (NPSs) and maintains quality of life (QoL) in nursing home residents with dementia. DESIGN: Open-label, blinded-outcome RCT. Randomisation 1:1, stratified by nursing home organisation and baseline NPS. Trial registration: NL7365. SUBJECTS: Dutch long-term care residents with moderate-to-severe dementia and systolic blood pressure (SBP) ≤160 mmHg during antihypertensive treatment. Exclusion criteria included heart failure NYHA-class-III/IV, recent cardiovascular events/procedures or life expectancy <4 months (planned sample size n = 492). MEASUREMENTS: Co-primary outcomes NPS (Neuropsychiatric Inventory-Nursing Home [NPI-NH]) and QoL (Qualidem) at 16 weeks. RESULTS: From 9 November 2018 to 4 May 2021, 205 participants (median age 85.8 [IQR 79.6-89.5] years; 79.5% female; median SBP 134 [IQR 123-146] mmHg) were randomised to either antihypertensive treatment discontinuation (n = 101) or usual care (n = 104). Safety concerns, combined with lacking benefits, prompted the data safety and monitoring board to advice a premature cessation of randomisation. At 16-week follow-up, no significant differences were found between groups for NPI-NH (adjusted mean difference 1.6 [95% CI -2.3 to 5.6]; P = 0.42) or Qualidem (adjusted mean difference - 2.5 [95% CI -6.0 to 1.0]; P = 0.15). Serious adverse events (SAEs) occurred in 36% (discontinuation) and 24% (usual care) of the participants (adjusted hazard ratio 1.65 [95% CI 0.98-2.79]). All 32-week outcomes favoured usual care. CONCLUSION: Halfway through this study, a non-significant increased SAE risk associated with discontinuing antihypertensive treatment was observed, and an associated interim analysis showed that significant worthwhile health gain for discontinuation of antihypertensive treatment was unlikely. This unbeneficial benefit-harm balance shows that discontinuation of antihypertensive treatment in this context does not appear to be either safe or beneficial enough to be recommended in older adults with dementia.


Subject(s)
Antihypertensive Agents , Dementia , Homes for the Aged , Nursing Homes , Quality of Life , Humans , Female , Male , Dementia/psychology , Dementia/drug therapy , Dementia/diagnosis , Aged, 80 and over , Antihypertensive Agents/therapeutic use , Antihypertensive Agents/adverse effects , Aged , Netherlands , Withholding Treatment , Hypertension/drug therapy , Hypertension/psychology , Treatment Outcome , Blood Pressure/drug effects
16.
Int J Geriatr Psychiatry ; 39(7): e6120, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38972859

ABSTRACT

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.


Subject(s)
Caregivers , Dementia , Focus Groups , Motivation , Humans , Kenya , Caregivers/psychology , Dementia/nursing , Dementia/psychology , Female , Male , Middle Aged , Adult , Aged , Rural Population , Family/psychology , Qualitative Research
17.
BMJ Open Qual ; 13(3)2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38964884

ABSTRACT

BACKGROUND: Improving the quality of life (QoL) is a significant healthcare priority, and it is an important health outcome for elderly individuals with Alzheimer's disease. Quality of Life in Late-Stage Dementia (QUALID) is a specific scale used to measure the QoL in elderly individuals with Alzheimer's. So far, limited quantitative research has been conducted on the psychometric properties of this scale. AIMS: This study was conducted to translate the QUALID Scale into Persian and evaluate its psychometric properties among family and professional caregivers of elderly individuals with Alzheimer's disease in Tehran. METHODS: A cross-sectional methodological study was conducted among family and professional caregivers of elderly individuals with Alzheimer's in Tehran, Iran in 2022. The questionnaire was translated into Persian using the forward-backward method. Face and content validity were assessed. Additionally, construct validity was examined using exploratory factor analysis (EFA) with Equamax rotation (n=210) and confirmatory factor analysis (CFA) (n=155). Cronbach's alpha and interclass correlation coefficient (ICC) were estimated to determine reliability. RESULTS: A total of 365 caregivers with a mean age of 14.18±42.60 years participated in this study. In the face and content validity phase, all 11 items were retained. To determine the construct validity, two factors were extracted in the EFA phase, including behavioural signs of discomfort and behavioural signs of social interaction. The findings of the CFA also indicated that all goodness of fit indices supported the final model. The Cronbach's alpha was excellent for both factors (0.814), and the ICC was calculated as 0.98. CONCLUSION: Based on the findings of this study, it can be concluded that the Persian version of the QUALID Scale has sufficient validity and reliability for measuring the QoL in elderly Iranian individuals with Alzheimer's.


Subject(s)
Alzheimer Disease , Caregivers , Psychometrics , Quality of Life , Humans , Quality of Life/psychology , Psychometrics/instrumentation , Psychometrics/methods , Male , Female , Iran , Alzheimer Disease/psychology , Cross-Sectional Studies , Surveys and Questionnaires , Aged , Reproducibility of Results , Caregivers/psychology , Caregivers/statistics & numerical data , Middle Aged , Adult , Aged, 80 and over , Dementia/psychology
18.
BMC Geriatr ; 24(1): 611, 2024 Jul 17.
Article in English | MEDLINE | ID: mdl-39020319

ABSTRACT

BACKGROUND: In Taiwan, residents with and without dementia mostly co-live in long-term care facilities. The behavioral and psychiatric symptoms of dementia residents often pose challenges for others living together. This study explored the symbiotic experiences of residents without dementia co-living with those with dementia in long-term care facilities in Taiwan to present their experiences of living together. METHODS: This was a cross-sectional descriptive study with a phenomenological design. Semi-structured face-to-face interviews were conducted with 30 residents without dementia from three long-term care institutions in Taiwan. Colaizzi's data processing steps were used for analysis. RESULTS: The analysis of interview transcripts revealed that the experiences of residents who lived with those with dementia were that of a "symbiosis." Three core themes were found: "the impact of co-living," "facing difficulties and coping," and "companionship and reciprocity." This study showed that residents without dementia may be affected by the behavioral and psychiatric symptoms of residents with dementia when co-living in long-term care facilities. However, there are also positive and mutually beneficial interactions between them. By helping people with dementia in their daily lives, residents without dementia feel happy and accomplished and their self-worth is enhanced. Furthermore, residents with dementia have more opportunities for social engagement and co-living interactions. CONCLUSION: These results can guide long-term care facilities without special care dementia units to support residents without dementia, reduce the interference of the behavioral and psychiatric symptoms of residents with dementia, and promote mutual benefits. However, these findings warrant further investigation.


Subject(s)
Dementia , Long-Term Care , Humans , Taiwan/epidemiology , Dementia/psychology , Dementia/epidemiology , Male , Long-Term Care/psychology , Female , Aged , Cross-Sectional Studies , Aged, 80 and over , Nursing Homes , Middle Aged
19.
JMIR Aging ; 7: e47565, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38963691

ABSTRACT

BACKGROUND: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. OBJECTIVE: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. METHODS: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. RESULTS: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]). CONCLUSIONS: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.


Subject(s)
Caregivers , Communication , Dementia , Long-Term Care , Mobile Applications , Quality of Life , Humans , Dementia/psychology , Dementia/nursing , Caregivers/psychology , Female , Male , Quality of Life/psychology , Aged , Middle Aged , Surveys and Questionnaires , Aged, 80 and over
20.
Age Ageing ; 53(7)2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38970550

ABSTRACT

The Scottish Intercollegiate Guidelines Network (SIGN) have recently published their guideline SIGN168 on 'Assessment, Diagnosis, Care, and Support for People with Dementia and their Carers'. The guideline makes evidence-based recommendations for best practice in the assessment, care and support of adults living with dementia. Topics featured in this guideline are limited to those prioritised by stakeholders, especially people with lived and living experience, and those not well covered under pre-existing guidance. We summarise the guideline recommendations related to identification and diagnosis of dementia, investigative procedures, postdiagnostic support living with dementia, including non-pharmacological approaches for distressed behaviours, using technology to support people with dementia, grief and dementia and changing needs of people with dementia. The guideline content is summarised as officially published, with additional commentary in the final section.


Subject(s)
Caregivers , Dementia , Humans , Dementia/diagnosis , Dementia/therapy , Dementia/psychology , Caregivers/psychology , Social Support , Scotland
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