Traditional models of respite, particularly those based within residential care settings, may not always be effective, and there is evidence of low acceptability for some people with dementia and carers. The aim of this study was to synthesise multiple stakeholders’ experiences of respite services for dementia and their perspectives on respite service development.
Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n=6), carers (n=9), front-line staff (n=7), managers (n=8), policy-makers/academics (n=5). Data were interpreted inductively using thematic analysis, with a focus on latent patterns of meaning.
Three salient themes were identified (‘Phases of Transition’, ‘Person-centred Respite Care’; and ‘Recalibrating Respite’). Three distinct phases of respite transitions for people with dementia and carers are discussed. Respite services that actively support transitions through empathic communication regarding clients’ concerns, support needs and preferences are highly valued. Clients described care resembling a ‘person-centred’ approach as their ideal, without using that term, but people with dementia do not always experience this type of care. The majority of providers indicated that they provide ‘person-centred care’, but many demonstrated a poor understanding of the concept; many of these providers have a biomedical view of dementia and the personhood status of people with dementia. Regarding service development, clients would prefer more choice, flexibility and responsiveness, including a shift away from residential provision towards an integrated continuum of personalised, strengths-focused community-based and in-home supports.
Any recalibration of respite towards a home/community focus will require a transformation in how dementia is constructed by society, as well as a significant financial investment. Other implementation considerations include: staffing and staff competency; and the co-ordination, integration and regulation of personalised, home-based care models. Finally, it may be necessary to replace the outdated term ‘respite’ with an alternative nomenclature that is not discordant with person-centred care principles.
Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities.
Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD’s initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity.
Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours.
Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents.
Takechi H, et al. | A Dementia Café as a Bridgehead for Community-Inclusive Care: Qualitative Analysis of Observations by On-the-Job Training Participants in a Dementia Café. | Dementia & Geriatric Cognitive Disorders | 2018 | Vol. 46 p.128-139
Background/Aims: Dementia cafés are becoming widespread as a new approach to dementia care, but their operational procedures and significance have not been adequately studied.
Methods: On-the-job training (OJT) for professionals planning to operate a dementia café in the future was conducted in a pioneering dementia café in Japan. The reports of OJT trainees’ observations and learning were analyzed qualitatively.
Results: Reports could be summarized in up to 9 themes: 2 related to the atmosphere and significance of the café, 3 related to the guests, such as people with dementia and their families, and 4 related to the café staff.
Discussion: The results of the present study identified the elements that make up dementia cafés and their significance and suggest that dementia cafés could be a new type of community resource for dementia care in the future.
Healthcare professionals in GP surgeries and the community will soon give advice on dementia risk to patients as part of the NHS Health Check.
Adding the dementia element to the NHS Health Check programme will enable healthcare professionals to talk to their patients about how they can reduce their dementia risk, such as by maintaining their social life, keeping mentally and physically active and stopping smoking.
It is estimated that over 850,000 people are living with dementia in the UK with little public understanding of how it’s possible to reduce the risk. While much of the NHS Health Check focuses on reducing cardiovascular disease (CVD) risk, the advice for preventing CVD is much the same as for dementia: ‘what’s good for the heart is good for the brain’.
This How To Guide will give care home managers and staff guidance on how to create a community within care homes. The guide will explain how to bring members of the local community into the home to volunteer, befriend, run activities and form friendship groups | Alzheimer’s Society
Alzheimer’s Society has been running the Airedale Social Movement Programme in Airedale, Wharfedale, Craven and Leeds since August 2016. The programme aims to bring local communities into the care home, and put the care home at the heart of the community.
One of the objectives of the programme is to spread the programme so that others can replicate the work that has been undertaken, and the Alzheimer’s Society have launched resources to support this including a How To Guide for Care Home staff.
Letter and poster templates are also available to download here
In this blog for the Evidently Cochrane #dementiaspotlight series, Carrie Jackson from the England Centre for Practice Development looks at innovations in supported care in the community, social living models, that might help people to live well with dementia
This blog looks at the potential for integrated community social living models such as Guest Houses with Care, co-created with older people and people living with dementia (PLWD), their carers and families to be cascaded to the UK from the Netherlands and Belgium. It will outline a new 4 year European funded project to cascade excellence in dementia policy and practice to the UK and consider what this may mean for the way in which we configure our services and approach to the concept of living well at home in the future.
The blog explores the question “How effective are models of housing and care used in countries other than the UK in supporting care in the community for PLWD and other long term conditions?”. This is increasingly important given the surge in younger onset dementia and our crisis in finding suitable funding models and appropriate services that will enable people to live independently for as long as possible at home.
As life expectancy increases so people often develop a range of conditions and disabilities in the years before death | British Journal of Community Nursing
Multimorbidity represents the most common ‘disease pattern’ found among the elderly and is characterised by complex interactions of co-existing diseases where a medical approach focused on a single disease does not suffice. People with dementia who also have other comorbidities do not always have their comorbid conditions managed as those without dementia which often lead to a high number of hospital admissions with longer lengths of stay and greater treatment costs. This case study presents the case management approach taken by Admiral Nursing in managing the complexities where there is comorbidity of a long-term condition and a diagnosis of dementia. By empowering the person and their carer with information and choices and through good case management and communication, people can be supported to live well and avoid inappropriate hospital admissions.
Housing organisations urged to unite against dementia | Azheimers UK
The charity Alzheimer’s UK has published the Dementia-friendly housing charter to help housing organisations better understand dementia and how housing, its design and supporting services can help improve and maintain the wellbeing of people affected by the disease.
Research from the leading dementia charity has previously found that 85 per cent of people want to stay living at home for as long as possible when diagnosed with dementia, but that a third of the general public would not know where to find information about how to make their home and living environment suitable.
The charter, developed in partnership with Housing & Care 21, is the latest innovation from Alzheimer’s Society’s Dementia Friendly Communities programme, which aims to ensure people affected by dementia feel understood and included in all aspects of community life.
Care planning is crucial in delivering improved care for people living with dementia, and supporting their families and carers | NHS England
The importance of having a high quality care plan that is reviewed regularly is reiterated through its inclusion in the CCG IAF as one of the dementia indicators. It also forms a key part of the forthcoming evidence-based treatment pathway for dementia.
Simply having a care plan, whilst being a good start, is not enough. Any care plan needs to be personalised to the specific needs of each person with dementia and reflect changes in their care needs over time. To support the adoption of high-quality care plans NHS England has developed a guide Dementia: Good Care Planning, with input from people living with dementia, their carers and health and social care professionals.
Cooper, C. et al. Age Ageing. Published online: December 4 2016
Background: UK Dementia Strategies prioritise fair access to mental and physical healthcare. We investigated whether there are inequalities by deprivation or gender in healthcare received by people with dementia, and compared healthcare received by people with and without dementia.
Conclusions: people with dementia, in particular women, appear to receive less primary healthcare, but take more psychotropic medication that may negatively impact their physical health. Reducing these inequalities and improving access of people with dementia to preventative healthcare could improve the health of people with dementia.