Combining music and life story work to enhance participation in family interaction in semantic dementia: a longitudinal study of one family's experience.

Background: Semantic dementia is a rarer dementia, classified as a type of frontotemporal dementia and a variant of primary progressive aphasia. Studies examining conversation in this condition and interventions to enhance participation in family life present as gaps in the research literature. Methods: Working with one family on a longitudinal basis, this study used conversation analysis and narrative analysis to provide a detailed assessment of communication . This information was used to design an individually tailored life story intervention to facilitate family interaction: a co-produced life story music DVD. Results: This intervention offered the family a resource that allowed the person with semantic dementia to display areas of retained competence and enhanced participation in interaction in a way that was not typically present in everyday conversation. Conclusions: It is argued that fostering greater opportunities for such in-the-moment connections is an important goal for intervention, particularly when language may be significantly compromised

People living with dementia and their family carers’ adherence to home-based Tai Chi practice

Objectives: The aim of this study was to understand what influenced people living with dementia and their family carers’ adherence to the home-based component of a Tai Chi exercise intervention. Method: Dyads, of people living with dementia and their family carers, who participated in the intervention arm of the TAi ChI for people living with demenTia (TACIT) trial, were invited to join weekly Tai Chi classes for 20 weeks and practice at home. Semi-structured dyadic home-interviews were conducted on average after 16 weeks of classes. The views of 15 dyads with a range of home practice adherence were sought in semi-structured interviews. The interviews were analysed using an inductive thematic approach. Results: Most participants found time to practise Tai Chi at home and practised for 17 hours on average. Amongst the barriers to adherence were participants’ competing commitments and a booklet not sufficiently conveying the Tai Chi movements. Hence, a video or DVD was requested by participants. Facilitators of their adherence to the home-based component of the intervention were their enjoyment of the practice and the development of a habit, which was supported by their commitment to the study and their willingness to benefit from Tai Chi. Conclusion: Enjoyment and perceived benefits had a great impact on participants living with dementia and their carers’ adherence to home-based Tai Chi practice. However, difficulties to perceive the Tai Chi movements through images might be hindering sustained participation and hence alternative aids such as videos and DVDs should be explored to facilitate adherence

‘Well I’m still the Diva!’ Enabling people with dementia to express their identity through graffiti arts: Innovative practice.

This article reports on a pilot study that investigated the use of graffiti arts as a medium for promoting self-expression in people with dementia. Two people with dementia attended a series of workshops with a graffiti artist where they explored their feelings of changing identity following their dementia diagnoses. As part of the workshops, they were encouraged to develop a personal ‘tag’ or signature to portray their sense of identity and a piece of street art to express ‘their message’. These completed artworks were displayed in a public space in Bournemouth, UK

Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Pulmonary rehabilitation implies a comprehensive assessment. Although several outcomes are commonly measured, those are selected mainly by health professionals and researchers, with the voice of patients and informal caregivers being minimally captured. Qualitative studies are fundamental to enhance our knowledge on perspectives of different stakeholders involved in pulmonary rehabilitation.publishe

Measurements of daily energy intake and total energy expenditure in people with dementia in care homes: the use of wearable technology.

Objectives: To estimate daily total energy expenditure (TEE) using a physical activity monitor, combined with dietary assessment of energy intake to assess the relationship between daily energy expenditure and patterns of activity with energy intake in people with dementia living in care homes. Design and setting: A cross-sectional study in care homes in the UK. Participants: Twenty residents with confirmed dementia diagnosis were recruited from two care homes that specialised in dementia care. Measurements: A physical activity monitor (Sensewear TM Armband , Body Media, Pittsburgh, PA) was employed to objectively determine total energy expenditure, sleep duration and physical activity. The armband was placed around the left upper triceps for up to 7 days. Energy intake was determined by weighing all food and drink items over 4 days (3 weekdays and 1 weekend day) including measurements of food wastage. Results: The mean age was 78.7 (SD ± 11.8) years, Body Mass Index (BMI) 23.0 (SD ± 4.2) kg/m2 ; 50% were women. Energy intake (mean 7.4; SD ± 2.6) MJ/d) was correlated with TEE (mean 7.6; SD ± 1.8 MJ/d; r=0.49, p<0.05). Duration of sleeping ranged from 0.4-12.5 (mean 6.1) hrs/d and time spent lying down was 1.3-16.0 (8.3) hrs/d. On average residents spent 17.9 (6.3-23.4) hrs/d undertaking sedentary activity. TEE was correlated with BMI (r=0.52, p<0.05) and body weight (r=0.81, p<0.001) but inversely related to sleep duration (r=-0.59, p<0.01) and time lying down (r=-0.62, p<0.01). Multiple linear regression analysis revealed that after taking BMI, sleep duration and time spent lying down into account, TEE was no longer correlated with energy intake. Conclusions: The results show the extent to which body mass, variable activity and sleep patterns may be contributing to TEE and together with reduced energy intake, energy requirements were not satisfied. Thus wearable technology has the potential to offer real-time monitoring to provide appropriate nutrition management that is more person-centred to prevent weight loss in dementi

Effects of a psychoeducational intervention for direct care workers caring for people with dementia: results from a 6-month follow-up study

YesThis study aimed to assess the effects of a psycho-educational intervention, designed to improve direct care workers’ stress, burnout and job satisfaction and person-centered communicative behavior with people with dementia. A pretest-posttest control group design was conducted in four aged-care facilities. Two experimental facilities received a psycho-educational intervention; two control facilities received an education-only. Data were gathered from fifty three care workers at baseline, immediately and six months after the intervention, through self-administrated instruments and video-recorded morning care sessions. The experimental group showed a significant decrease in care workers’ burnout and a significant improvement in several communicative behaviors (e.g., involvement). Stress levels deteriorated at six months and no intervention effects were found for job satisfaction. The findings highlight the importance of providing care workers with both technical competences and tools for stress management as this might be associated with a reduction of their levels of exhaustion and improved communicative behaviors.Foundation for Science and Technolog

Living with semantic dementia: a case study of one family's experience

Semantic dementia is a variant of frontotemporal dementia and is a recently recognized diagnostic condition. There has been some research quantitatively examining care partner stress and burden in frontotemporal dementia. There are, however, few studies exploring the subjective experiences of family members caring for those with frontotemporal dementia. Increased knowledge of such experiences would allow service providers to tailor intervention, support, and information better. We used a case study design, with thematic narrative analysis applied to interview data, to describe the experiences of a wife and son caring for a husband/father with semantic dementia. Using this approach, we identified four themes: (a) living with routines, (b) policing and protecting, (c) making connections, and (d) being adaptive and flexible. Each of these themes were shared and extended, with the importance of routines in everyday life highlighted. The implications for policy, practice, and research are discussed. Keywords : case studies, dementia, families, caregiving, interviews, semistructured, narrative inquir

Minocycline at 2 different dosages vs placebo for patients with mild alzheimer disease

Importance - There are no disease-modifying treatments for Alzheimer disease (AD), the most common cause of dementia. Minocycline is anti-inflammatory, protects against the toxic effects of β-amyloid in vitro and in animal models of AD, and is a credible repurposed treatment candidate. Objective - To determine whether 24 months of minocycline treatment can modify cognitive and functional decline in patients with mild AD. Design, Setting, and Participants Participants were recruited into a double-blind randomized clinical trial from May 23, 2014, to April 14, 2016, with 24 months of treatment and follow-up. This multicenter study in England and Scotland involved 32 National Health Service memory clinics within secondary specialist services for people with dementia. From 886 screened patients, 554 patients with a diagnosis of mild AD (Standardised Mini-Mental State Examination [sMMSE] score ≥24) were randomized. Interventions - Participants were randomly allocated 1:1:1 in a semifactorial design to receive minocycline (400 mg/d or 200 mg/d) or placebo for 24 months. Main Outcomes and Measures - Primary outcome measures were decrease in sMMSE score and Bristol Activities of Daily Living Scale (BADLS), analyzed by intention-to-treat repeated-measures regression. Results - Of 544 eligible participants (241 women and 303 men), the mean (SD) age was 74.3 (8.2) years, and the mean (SD) sMMSE score was 26.4 (1.9). Fewer participants completed 400-mg minocycline hydrochloride treatment (28.8% [53 of 184]) than 200-mg minocycline treatment (61.9% [112 of 181]) or placebo (63.7% [114 of 179]; P < .001), mainly because of gastrointestinal symptoms (42 in the 400-mg group, 15 in the 200-mg group, and 10 in the placebo group; P < .001), dermatologic adverse effects (10 in the 400-mg group, 5 in the 200-mg group, and 1 in the placebo group; P = .02), and dizziness (14 in the 400-mg group, 3 in the 200-mg group, and 1 in the placebo group; P = .01). Assessment rates were lower in the 400-mg group: 68.4% (119 of 174 expected) for sMMSE at 24 months compared with 81.8% (144 of 176) for the 200-mg group and 83.8% (140 of 167) for the placebo group. Decrease in sMMSE scores over 24 months in the combined minocycline group was similar to that in the placebo group (4.1 vs 4.3 points). The combined minocycline group had mean sMMSE scores 0.1 points higher than the placebo group (95% CI, −1.1 to 1.2; P = .90). The decrease in mean sMMSE scores was less in the 400-mg group than in the 200-mg group (3.3 vs 4.7 points; treatment effect = 1.2; 95% CI, −0.1 to 2.5; P = .08). Worsening of BADLS scores over 24 months was similar in all groups: 5.7 in the 400-mg group, 6.6 in the 200-mg group, and 6.2 in the placebo groups (treatment effect for minocycline vs placebo = –0.53; 95% CI, −2.4 to 1.3; P = .57; treatment effect for 400 mg vs 200 mg of minocycline = –0.31; 95% CI, −0.2 to 1.8; P = .77). Results were similar in different patient subgroups and in sensitivity analyses adjusting for missing data. Conclusions and Relevance - Minocycline did not delay the progress of cognitive or functional impairment in people with mild AD during a 2-year period. This study also found that 400 mg of minocycline is poorly tolerated in this population

Designing a complex intervention for dementia case management in primary care

Background: Community-based support will become increasingly important for people with dementia, but currently services are fragmented and the quality of care is variable. Case management is a popular approach to care co-ordination, but evidence to date on its effectiveness in dementia has been equivocal. Case management interventions need to be designed to overcome obstacles to care co-ordination and maximise benefit. A successful case management methodology was adapted from the United States (US) version for use in English primary care, with a view to a definitive trial. Medical Research Council guidance on the development of complex interventions was implemented in the adaptation process, to capture the skill sets, person characteristics and learning needs of primary care based case managers. Methods: Co-design of the case manager role in a single NHS provider organisation, with external peer review by professionals and carers, in an iterative technology development process. Results: The generic skills and personal attributes were described for practice nurses taking up the case manager role in their workplaces, and for social workers seconded to general practice teams, together with a method of assessing their learning needs. A manual of information material for people with dementia and their family carers was also created using the US intervention as its source. Conclusions: Co-design produces rich products that have face validity and map onto the complexities of dementia and of health and care services. The feasibility of the case manager role, as described and defined by this process, needs evaluation in ‘real life’ settings