Search

Objectives : This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods : This was a cross-sectional, observational study. People with dementia and their carers (n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results : Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans – Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04–12.99). Discussion : Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden. [ABSTRACT FROM AUTHOR]

Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don't receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania. This study aimed to understand people with dementia, and their caregivers' experiences of living with dementia in Tanzania and the perceived needs of people with dementia. Methods: Qualitative, semi-structured interviews were conducted with 14 people with dementia and 12 caregivers in Moshi, Tanzania. Interviews were audio-recorded, translated, transcribed and analysed using a Framework Analysis approach. Results: Three sub-themes were identified within data describing the experience of 'Living with Dementia in Tanzania': 'Deteriorations in Health', 'Challenges to living with Dementia in Tanzanian Culture', and 'Lack of Support': people with dementia faced challenges due to social isolation, stigmatisation, and lack of caregiver knowledge on how best to provide support. Collectively, these impacted on both the physical and mental health of people with dementia. Misconceptions about dementia aetiology related to age, stresses of daily life and other co-morbidities. People with dementia were motivated to access treatment, exhibiting pluralistic health-seeking behaviours. There was an overall preference for non-pharmacological interventions over medication, with high levels of trust in medical professional opinions. Conclusions: Living with dementia in Tanzania is influenced by both cultural and religious factors. More work is needed to target supplementary healthcare (with efforts to promote accessibility), support for caregivers and public health education about dementia to overcome existent misconceptions and stigma. [ABSTRACT FROM AUTHOR]

Objectives: Positive psychology outcome measures aim to quantitatively document the character strengths that people use to maintain their wellbeing. Positive aspects of caregiving including the use of character strengths is gaining credence in dementia carer literature but there remain few psychometrically robust tools by which to capture this. The current study evaluated the psychometric properties of a newly developed measure of hope and resilience for family carers of people living with dementia. Methods: An online study where family carers (n = 267) completed the newly adapted Positive Psychology Outcome Measure – Carer version (PPOM-C), the Hospital Anxiety and Depression Scale – Depression subscale (HADS-D), The Short Form Health Survey (SF-12), and The Multidimensional Scale of Perceived Social Support (MSPSS). Results: Psychometric analysis indicated strong properties for the PPOM-C in family carers, with two items dropped to improve the internal consistency. Convergent validity was established, with strong correlations between the hope, resilience, depression symptomology, quality of life and social support. A Confirmatory Factor Analysis indicated acceptable model fit. Discussion: The PPOM-C is a psychometrically robust tool that can be recommended for use in large scale psychosocial research. The use of this measure in research and practice will provide a more nuanced understanding of the caregiving role and how to support wellbeing in this population. [ABSTRACT FROM AUTHOR]

Background: Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. Methods: An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. Findings: The DAC-International was developed, comprising three modules: 'What is dementia?'; 'Positive engagement' and 'Caring for someone with dementia'. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country (n = 85), which indicated acceptability to participants. Conclusions: The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses. [ABSTRACT FROM AUTHOR]

There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect on a resident's quality of life and behavioural and psychological symptoms of dementia? After searching and screening on the three major databases PsycINFO, MEDLINE and CINAHL Plus for papers published between January 2005 and May 2021, 22 papers were included for synthesis and appraisal due to their relevance to family involvement interventions and or family involvement with resident outcomes. Results show that in 11 interventions designed to enhance at least one type of family involvement, most found positive changes in communication and family–staff relationships. Improvement in resident behavioural and psychological symptoms of dementia was reported in two randomised controlled trials promoting partnership. Visit frequency was associated with a reduction of behavioural and psychological symptoms of dementia for residents with moderate dementia. Family involvement was related to positive quality of life benefits for residents. Contrasting results and methodological weaknesses in some studies made definitive conclusions difficult. Few interventions to specifically promote family involvement within care homes following placement of a relative with dementia have been evaluated. Many proposals for further research made over a decade ago by Gaugler (2005) have yet to be extensively pursued. Uncertainty remains about how best to facilitate an optimum level and type of family involvement to ensure significant quality of life and behavioural and psychological symptoms of dementia benefits for residents with dementia. [ABSTRACT FROM AUTHOR]

Background: Depression in dementia is common and associated with negative health outcomes. Mindfulness-based cognitive therapy is a recommended treatment of choice for recurrent depression, but its use for depression in dementia is yet to be assessed. Objective: This study aimed to investigate the experiences of people with depression and dementia who participated in the mindfulness-based cognitive therapy intervention and those of their carers and facilitators. Methods: This qualitative study was nested within a randomised controlled feasibility study. Semi-structured interviews were conducted with 18 people (eight people with dementia and depression, six carers and four course facilitators). Thematic analysis was used to analyse the data. Findings: Several beneficial effects of mindfulness-based cognitive therapy were described. These were a sense of shared suffering among the group, greater present moment focus and awareness, various positive emotional changes, including greater self-compassion, and benefits for carers, such as the reduction of anxiety. Specific aspects of the programme were identified as particularly useful, including facilitator characteristics and certain mindfulness practices. Carer involvement, cognitive difficulties and barriers to home practice influenced engagement with the course. Facilitators described adaptations made to mindfulness-based cognitive therapy and suggested additional modifications for future groups. Conclusion: Results of this process evaluation suggest that mindfulness-based cognitive therapy is a potentially useful intervention for people with depression in dementia, but that further adaptation of the intervention is required to make the programme suitable for this clinical population. [ABSTRACT FROM AUTHOR]

Aim: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed. Results: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were 'making sense of dementia', 'impact of dementia', 'coping' and 'support'. Conclusions: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery. [ABSTRACT FROM AUTHOR]

Objectives: Cognitive stimulation therapy (CST) is a brief, non-pharmacological intervention for people with dementia, with an established evidence base for improving cognition and quality of life. It is widely implemented in National Health Service (NHS) settings, but little is known about its naturalistic use. The aim of this survey was to identify and explore inclusion criteria, dose and quality of CST across services in Great Britain (England, Scotland and Wales). Methods: All NHS memory clinics and services for people with dementia were contacted and asked to complete a mixed methods online survey on CST delivery in their service. Questions were centred on who provided CST, who received CST, the dose of CST and any outcomes that were routinely measured. Results: A total of 57/186 services responded, giving a response rate of 30.7%. While the majority reported offering CST (87.7%), there was variability in how this was delivered. Differing inclusion criteria included the use of varying cognitive and behavioural outcome measures, and CST was reported as being offered once and twice weekly. Services also differed in how they evaluated the quality of CST and how this evidence was incorporated for future sessions. Conclusion: While there was a low response rate, this survey indicates that there is significant variability in how CST is used in clinical practice, with many trusts not adhering to the evidence base. To ensure that people with dementia are consistently offered evidence-based, high-quality CST across NHS settings, further standardisation of inclusion criteria, dose and outcomes is needed. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to develop and explore feasibility of SettleIN, a staff-led programme about healthy adjustment for people with dementia following care home placement. The main foci were intervention feasibility and the impact of the programme on resident quality of life and mood. Method: A manualised intervention developed through consultation with 47 experts was trialled using a mixed-method design. Thirteen new residents with dementia and 24 staff were recruited from six UK care homes. Outcomes were measured at baseline, intervention completion and four-week follow-up. Analysis of staff interviews and field notes is reported. Results: Most experts deemed SettleIN to be well structured, comprehensive and appropriate. However, uptake of SettleIN was low. When implemented, staff emphasised integration ease and staff benefits, but that SettleIN may not be universally suitable. High attrition, most commonly due to death and hospitalisation, and partial results from only four participants meant that there was a lack of support for the positive outcomes. Feasibility problems included a lack of staff time and dependency on families for some components. Conclusion: SettleIN is acceptable to a wide range of stakeholders though does not appear to be feasible in its current form and improvements are recommended. A second pilot phase is required, which will address the reasons for the high attrition rate in this study and amend the methodology accordingly. This is an important work, as a manualised and standardised approach to healthy adjustment in care is unique and could have huge clinical significance if effective. [ABSTRACT FROM AUTHOR]

Objective: To assess the extent of UK speech and language therapy engagement in assessment and management of primary progressive aphasia, determine the factors contributing to any shortfall and explore a gap in the research literature on current speech and language therapy practices with people with primary progressive aphasia. Methods: A 37-item, pilot-tested survey was distributed electronically via clinical networks and through the Royal College of Speech and Language Therapists. Survey items included questions on intervention approaches, referral numbers and demographics, referral sources and access to services. Results: One hundred and five speech and language therapists completed the survey. Over the previous 24 months, respondents reported seeing a total of 353 people with primary progressive aphasia (an average of 3.27 per speech and language therapist). Neurologists were the most commonly reported referrers to speech and language therapy (22.5%). Seventy-eight percent of respondents reported that people with primary progressive aphasia experienced barriers to accessing speech and language therapy. Key barriers were a lack of referrer awareness of a speech and language therapist's role, and restrictive eligibility criteria for services. Conclusions: This study highlighted inequities in access to speech and language therapy for people with primary progressive aphasia. The medical and speech and language therapy professions need to develop appropriate care pathways for people with primary progressive aphasia. Speech and language therapists have a duty to develop a relevant evidence base for speech and language interventions for people with primary progressive aphasia. [ABSTRACT FROM AUTHOR]

Positive psychology is gaining credence within dementia research but currently there is a lack of outcome measures within this area developed specifically for people with dementia. Authors have begun adopting positive psychology measures developed with other populations but there is no consensus around which are more appropriate or psychometrically robust. A systematic search identified measures used between 1998 and 2017 and an appraisal of the development procedure was undertaken using standardised criteria enabling the awarding of scores based on reporting of psychometric information. Twelve measures within the constructs of identity, hope, religiosity/spirituality, life valuation, self-efficacy, community and wellbeing were identified as being used within 17 dementia studies. Development procedures were variable and scores on development criterion reflected this variability. Of the measures included, the Herth Hope Index, Systems of Belief Inventory and Psychological Wellbeing Scale appeared to be the most robustly developed and appropriate for people with dementia. [ABSTRACT FROM AUTHOR]

This article describes a 10-session group-based Mindfulness Program for people with mild to moderate dementia. It aims to equip people with dementia with skills to manage psychological distress, with support from carers. The Mindfulness Program was developed through reviews of existing literature, consultation with experts, and a focus group with people with dementia. In a randomized controlled feasibility and pilot trial with people with mild to moderate dementia in care homes, it was found to significantly increase quality of life. The manual presented here is designed to be administered flexibly to promote participants' personhood. The protocol is designed for use by therapists with experience in practicing mindfulness meditation. [ABSTRACT FROM AUTHOR]

Introduction: The delivery of cognitive stimulation as a cognitive based psychosocial intervention for people with mild to moderate dementia is supported in the National Institute for Health and Care Excellence guidelines. There is a strong evidence base for its effectiveness in providing improvements in cognition and quality of life for people with dementia. However, less is known about its delivery and its impact using outcome measures when used in practice. Methods: A 1-year observational study was conducted, which measured the cognition and quality of life of 89 people with dementia living in care homes and the community and were in receipt of cognitive stimulation therapy and a maintenance programme as part of their usual care in practice. Results: A paired sample T-test demonstrated a significant improvement in cognition, duality of life remained unchanged for people with mild to moderate dementia. Conclusions: This study reports promising findings with demonstrated benefits for people with dementia and strengthens the evidence base supporting its use in routine care. However, attention should be given to the level of cognitive impairment of attendees. This research is relevant to the field of occupational therapy as the profession has knowledge of using psychosocial interventions and a commitment to evidence-based practice. [ABSTRACT FROM AUTHOR]

Introduction Cognitive stimulation therapy is a well-recognised evidence-based cognitive psychosocial intervention for people with mild to moderate dementia. Despite increased use of the programme, little is known about its implementation in practice. Method A service evaluation of care home staff that received cognitive stimulation therapy training was conducted, and on-going support to deliver the programme in practice was provided. Outcome measures collected at baseline and 6 month follow up included sense of competence, learning transfer, dementia knowledge, and approaches to dementia. Attendance records were also collected. Results Ten out of 12 care homes attempted to deliver the cognitive stimulation therapy programme after receiving training and support. Overall, a high number of sessions were delivered. In addition, the staff members demonstrated significant improvements in positive approaches to dementia care and sense of competence. Conclusions This article reports encouraging findings of training and outreach support with demonstrated improvements in staff outcomes and successful implementation of the cognitive stimulation therapy programme. These results support the current evidence base supporting the use of cognitive stimulation therapy in routine care. This is relevant to occupational therapy as the profession plays a crucial part in the implementation of psychosocial interventions for dementia in practice. [ABSTRACT FROM AUTHOR]

Background: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. Aim: This study explored the views of former carers on assisted dying in dementia. Design: This was a qualitative study using thematic analysis. Setting/participants: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. Results: While many supported the individual’s right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Conclusion: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required. [ABSTRACT FROM AUTHOR]

This article describes a 10-session cognitive-behavioral therapy (CBT) used in a randomized controlled trial with people with anxiety and mild-to-moderate dementia. The aim of the therapy is to reduce symptoms of anxiety by increasing a sense of safety and self-efficacy. The therapy is characterized by a person-centered approach to CBT, using individual tailoring to accommodate for cognitive deficits and other challenges. Three phases of therapy are described: (a) socialization to model (including overcoming barriers to participation), goal setting, and formulation; (b) application of cognitive and behavioral change techniques to address unhelpful autonomic reactions, “strategic” reactions, “rules for living,” and interpersonal aspects; and (c) consolidation and ending in the context of chronic, deteriorating illness. The approach prioritizes direct work with the person with dementia, with the involvement of a “supportive other” where available and when necessary. The protocol is designed for use by therapists with prior experience in CBT. [ABSTRACT FROM PUBLISHER]

The article presents a pilot study which aims to investigate the effectiveness of Sonas, a group intervention involving multisensory stimulation, for patients with dementia. The study included 39 patients who were randomized to receive either 14 sessions of Sonas or treatment. It measured the quality of life (QoL), communication, anxiety, depression and behavioral disturbance. It concludes that Sonas would not lead to improvements in QoL and behavioral and psychological symptoms of dementia.

This study reports on the process of developing a maintenance programme manual following the Medical Research Council guidelines representing the ‘phase I’ or modelling. This study uses an inductive thematic analysis approach to examine user perceptions on the maintenance cognitive stimulation therapy (CST) programme. Three focus groups were carried out with people with dementia, three with staff, and three with family carers of people with dementia. In total 17 people with dementia, 13 staff and 18 family carers took part in separate focus groups. The main findings from the user focus clearly supports the recent draft NICE guidelines on dementia (NICE‐SCIE, 2006) that states that all people with mild/moderate dementia should be ‘given the opportunity to participate in a structured group of cognitive stimulation programme’. People with dementia highly valued the opportunity to take part in a mental stimulating group programme and found it vital in keeping them healthy and active. Most family carers and staff were very positive but expressed concerns about the effectiveness of this type of programme and gave real life examples where the idea of ‘use it or lose it’ did not apply. Results from the focus groups will be used in order to produce a new version of the maintenance CST draft manual and this will be evaluated in a large randomized controlled trial (RCT). [ABSTRACT FROM PUBLISHER]