IntroductionAs chronic conditions such as dementia become increasingly prevalent, the role of caregivers will become ever more critical. In the East African region, little is known about the experiences of caring for people living with dementia. This study aims to describe the views of being a caregiver, including day-to-day responsibilities and duties, determine the impact of caregiving and understand participants’ experiences of supports available or required to facilitate caring for a person living with dementia in Kenya.MethodsThis was a qualitative study that employed an interpretative phenomenological analysis (IPA) approach. We used convenience sampling to identify study participants in three counties in Kenya. Participants were main caregivers for the family and hence included both families and paid caregivers. We recruited 10 caregivers to participate in the study (9 females and 1 male). Data were analysed manually following the IPA approach.ResultsThree main themes emerged from the analysis: the personal experience of caregiving, supports to assist with caregiving and the perceived unmet care needs. The challenges experienced varied based on the support available to the caregiver, the number of years in the caregiving role and knowledge and skills related to providing care.ConclusionOur study shows that caring for a person living with dementia is an arduous experience, requiring significant mental and physical effort. The study highlights a general lack of knowledge and awareness of dementia among families, healthcare professionals and the general public. Training programmes for caregivers, including dementia care skills, educating healthcare practitioners and organising public awareness programmes to understand and accept dementia are urgently needed.

Young onset dementia has become a growing challenge in national healthcare systems. Concerns about the situation have already been expressed; however, they mostly report the views of services end-users. Aimed at finding out useful further improvement, interviews documenting the working experiences of professionals addressing healthcare services to people with young onset dementia (YOD) were analysed qualitatively. The interviews resulted in four themes and twelve categories. The themes regarded services' complexity and responsiveness, the levels of education and knowledge on YOD, the impact that serving people with YOD reflects on staff working experience and quality of life, and a series of proposals aimed at improving services by giving people with YOD and families the provision of care they deserve. Although some of the themes recapped the ones reported in the previous literature, the mixture of internally and externally driven instances represented in the themes depict the complexity of care delivery in the services. Findings are discussed in the light of a pragmatical framework capable of suggesting what changes services should implement to be timely responsive.

Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.

Life story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further research is required to explore experiences of life story work as a shared endeavour. Furthermore, the use of technology to create life stories is growing, with little known about how digital elements are experienced. This study aimed to understand these gaps by exploring the shared experiences of individuals with dementia and their partner/spouse creating a digital life story book. Four couples participated in the six-week creation of their digital life story book. Following this, qualitative data relating to couples' experiences were collected via semi-structured interviews. Thematic analysis was used to interpret data and identified four superordinate themes relating to the shared experiences of creating their digital life story book: 'Creating a life story book is a huge undertaking', 'Looking back and looking forward: The emotional journey', 'Whose story is it and who does it belong to?' and 'Challenges of using technology to build the life story book'. Overall, this study demonstrated that creating a digital life story was a positive experience that can support couples' well-being, but we should not underestimate the time it will take and range of emotions experienced. The experience of using technology varied, emphasising that we must be mindful of individual preferences before considering a digital approach.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

To understand nurses' perceptions of quality nursing care in the dementia-specific care unit. As the world's population ages, the incidence of dementia is projected to rise in tandem. The requirement for skilled, dementia-trained registered nurses who can provide quality nursing care will need to increase accordingly to meet the needs of these individuals. Extensive research has been completed on dementia nursing care in a variety of settings; however, little research has been undertaken into nurses' perceptions of quality nursing care in the dementia-specific care unit. Understanding how registered nurses perceive quality nursing care in the dementia-specific care unit is important and provides valuable information about nursing practice in this environment for nurses and decision-makers. Gaining a better understanding of quality nursing care in this care unit may result in better nurse education and an improved patient experience. It may also assist nursing organisations, residential aged-care facilities, government bodies and nongovernment agencies that support, manage, and oversee dementia-specific care units. A grounded theory study was conducted to understand nurses' perceptions of quality nursing care in dementia-specific care units. The study involved interviewing nine registered nurses working in two dementia-specific care units on the Gold Coast, Queensland. Data were collected during semi-structured interviews and analysed using both constant comparison and thematic analysis. Three themes emerged from this study-Caring at the Coalface, Labour of love and the Business of Dementia Healthcare. The largest theme, Labour of love, represents the personal reward and feeling of satisfaction six nurses said they experienced when interacting with individuals living in the dementia-specific care unit. They identified and repeatedly discussed the joy and fulfilment they experienced when caring for them, and considered this to be an essential element of quality nursing care. It was evident from the data that the nurses cared very deeply about these individuals, and despite increased risks to personal safety at work, they did not want to work anywhere else. This article reports on the largest and key theme identified in the study Labour of Love.

Music-based therapies have been widely evaluated for individuals with dementia. Music Mirrors (MM) is a new music-based reminiscence tool that looks to improve person-centred care, encourage conversation and stimulate reminiscence. Since MM is designed for persons with mild dementia, this project looked to determine the feasibility, acceptability and efficacy of the tool with three individuals with moderate to severe dementia. Over 6weeks, 12 sessions were conducted, assessing for mood and behavioural changes during and after each session. Despite limitations to the project, overall results suggest that MM can be beneficial to people with moderate to severe dementia.

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.

Research with West Australian people with dementia and their carers living in the community identified that they have a diverse range of needs. However, little is known about the needs of people with dementia and their carers from the perspectives of service providers who provide formal support. This study aimed to investigate the needs of people with dementia and their carers living in the community from the perspectives of service providers, and compare this to service recipients. This interpretive descriptive study used focus groups to collect qualitative data from service providers (N = 10). Data were analysed using a hybrid inductive-deductive approach to compare the needs identified by service providers to those identified by people with dementia and their carers. Three major themes were identified: (i) services and supports required by people with dementia and their carers should be flexible, tailored, and equitable; (ii) building capacity to support carers and people with dementia; and (iii) systems designed to care were fragmented and difficult to navigate. Service providers prioritise needs that are limited to their current capacity to provide in contrast to the holistic needs of people with dementia and their carers. There was poor alignment between the perceived needs of people with dementia and their carers and the needs prioritised by service providers in the West Australian community. This gap may reduce the ability of services to effectively support people with dementia to remain living in the community.