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Currently, post-diagnostic dementia care and support in England and Wales is highly variable, and often insufficient in meeting the needs of people living with dementia and their families.
To develop and deliver a new primary care based intervention to enable people living with dementia and their carers to live as well as possible from the point of diagnosis to end of life.
We conducted a survey and interviews with managers and commissioners of dementia services, and in-depth qualitative studies of six different existing service models to understand current post-diagnostic support in England and Wales. We also reviewed relevant literature on the management of long-term conditions and models of post-diagnostic support. Using the findings, a new intervention has been produced through a co-development process involving stakeholder task groups, our patient and public involvement group (the Dementia Care Community), and the multidisciplinary programme management board.
Our findings highlighted key priorities from the perspective of people living with dementia, their carers, and professionals which focus on the need for personalised, proactive and holistic care. We also identified a number of challenges in the provision of good quality post-diagnostic support, and examples of how these could be overcome to deliver best practice. Importantly, we found that no one service model delivered all aspects of post-diagnostic dementia support well.
The new intervention will focus on three main areas: developing systems for delivering evidence-based support; delivering tailored care and support; and building capacity and capability. A clinical dementia expert, a specialist nurse or similar professional with dementia expertise, will be based in primary care to lead and facilitate change across these three interlinked areas to develop systems and services that meet the needs of all older people living with dementia.
Our new intervention will now be tested in practice in a feasibility and implementation study.
According to Age UK, over 3 million people across the UK are either malnourished or at risk of malnourishment, of which over 1 million are over the age of 65 (Age UK, 2017). Over 30 per cent of adults are malnourished on admission to hospital, increasing hospital stay, risk of complications and likelihood of being discharged into care (BAPEN, 2003; Stratton et al, 2004; Age Concern, 2006; Brotherton et al, 2010; Elia, 2015). Malnutrition in people aged 65 and older costs healthcare in England almost ￡10 billion per year (Elia, 2015). Age UK highlighted the problem of impractical eating environments for many older patients, and made seven recommendations to tackle malnutrition in older hospital patients, which focus on assistance at mealtimes and identification of patients at nutritional risk.
The Better Hospital Food programme launched in 2001 was successful in improving the quality of hospital food, although it did not specifically address older patients’ needs, for example, reduced sensory perception, smaller appetites and in some instances, eating difficulties. Approximately 12 per cent of older hospital patients have intermittent swallowing difficulty, which is of concern as the sensorial quality of foods for such patients is poor and does little to stimulate the appetite of those at particular nutrition risk.
The Department of Health (DH) and National Health Service (NHS) devised a Joint Action Plan for improving nutritional care in hospitals with five priorities for action: raising awareness of the link between good nutrition and health; ensuring accessible guidance; encouraging nutritional screening; nutrition training; and improving standards of inspection (DH, 2007). The DH Dignity in Care campaign (DH, 2006) recognised that delivering adequate food is ‘a fundamental human right’ and stressed the need for maintaining dignity and providing older people with the assistance they require at mealtimes. The Care Quality Commission's Dignity and Nutrition Inspection Programme highlighted concerns over nutritional care, including patients not being given the help they needed to eat, meaning that they struggled to eat or were physically unable to eat meals; patients being interrupted during meals, meaning they could not finish their meal; accurate records of food and drink not being kept so progress was not monitored; and many patients were not able to clean their hands before meals.
Lewy body dementia (consisting of dementia with Lewy bodies and Parkinson's disease dementia) is a common neurodegenerative disease characterised by visual hallucinations, fluctuating attention, motor disturbances, falls, and sensitivity to antipsychotics. This combination of features presents challenges for pharmacological management. Given this, we sought to review evidence for non-pharmacological interventions with patients with Lewy body dementia and their carers. Bibliographic databases were searched using a wide range of search terms and no restrictions were placed on study design, language, or clinical setting. Two reviewers independently assessed papers for inclusion, rated study quality, and extracted data. The search identified 21 studies including two randomised controlled trials with available subgroup data, seven case series, and 12 case studies. Most studies reported beneficial effects of the interventions used, though the only sizeable study was on dysphagia, showing a benefit of honey-thickened liquids. Given the heterogeneity of interventions and poor quality of the studies overall, no quantitative synthesis was possible. Overall, identified studies suggested possible benefits of non-pharmacological interventions in Lewy body dementia, but the small sample sizes and low quality of studies mean no definite recommendations can be offered. Our findings underscore the clear and urgent need for future research on this topic.
Positron emission tomography (PET) and single photon emission computed tomography (SPECT) brain imaging are widely used as diagnostic tools for suspected dementia but no studies have directly compared participant views of the two procedures. We used a range of methods to explore preferences for PET and SPECT.
Patients and controls (and accompanying carers) completed questionnaires immediately after undergoing PET and SPECT brain scans. Pulse rate data were collected during each scan. Scan attributes were prioritized using a card sorting exercise; carers and controls additionally answered willingness to pay (WTP) questions.
Few differences were found either between the scans or groups of participants, although carers marginally preferred SPECT. Diagnostic accuracy was prioritized over other scan characteristics. Mean heart rate during both scans was lower than baseline heart rate measured at home (p < 0.001).
Most participants viewed PET and SPECT scans as roughly equivalent and did not have a preference for either scan. Carer preference for SPECT is likely to reflect their desire to be with the patient (routine practice for SPECT but not for PET), suggesting that they should be able to accompany vulnerable patients throughout imaging procedures wherever possible. Pulse rate data indicated that brain imaging was no more stressful than a home visit (HV) from a researcher. The data do not support the anecdotal view that PET is a more burdensome procedure and the use of PET or SPECT scans in dementia should be based on diagnostic accuracy of the technique.
Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.
This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.
People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.
Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.
Background: Health care professionals are recommended to deliver patient-centered care in dementia; however, guidance and training on how to do this in practice is currently lacking. The aim of this study was to develop and evaluate pragmatically an educational intervention for old age psychiatrists to promote patient-centered care in their consultations with people with dementia and their carers.
Methods: We used a range of methods to (i) identify the theoretical components of patient-centered care (literature review) and (ii) observe actual practice (video recording of 53 consultations between old age psychiatrists and people with dementia and their family carers). We also interviewed participants from (ii) including 7 old age psychiatrists, 25 people with dementia and 44 carers. From this we developed a workshop for old age psychiatrists and piloted and evaluated it. Pre- and post-workshop questionnaires were completed; the latter included an assessment of planned and subsequent behavior change by participants.
Results: The educational workshop, attended by 41 old age psychiatrists, focused on how best to structure the consultation and the most effective communication skills to use in consultation with people with dementia. Three months after the workshop, 59% had made one or more changes to the structure of their consultations, 71% had used new communication skills and 56% had reflected further on their practice.
Conclusions: We developed an educational intervention with both a theoretical and empirical basis. The workshops resulted in many changes to self-reported practice; whether this was noticeable to patients and carers requires further study.
There is growing recognition of the need for outcome measures which reflect
the aims of services for people with dementia. The development and
application of existing outcome measures has often marginalised people with
dementia. ‘Experts’ and carers have been viewed as primary sources when
identifying relevant outcomes or domains of quality of life, and proxy
respondents have often been responsible for rating outcomes on the resulting
measures. This paper reports a small consultation with people with dementia
and their carers to identify the desired outcomes of community care. While
there was considerable overlap in the outcomes identified by people with
dementia and their carers, a number of limitations of relying solely on carers
as proxy respondents were identified. A key outcome, which has been
relatively neglected in previous work, was maximising a sense of autonomy. A
range of outcomes related to the ways in which services are delivered were also
identified. Future evaluative studies should encompass both quality-of-life
outcomes and service-process outcomes (the impacts of the ways in which
services are delivered) in addition to other outcome measures relevant to the
aims and objectives of the service.
The financial, opportunity and social costs and benefits of providing
support to frail older people are described within an economic framework.
Mentally and/or physically frail older people were identified through
screening interviews with random community samples of people aged 65 and
over in four UK areas: 884 frail older people living in private households
nominated key informal supporters and 650 of these supporters were
interviewed. Around half the supporters reported financial costs (43 per
or lost social opportunities (45 per cent). A minority of supporters had
their working hours or withdrawn from employment because of caregiving.
Nearly all supporters reported at least one social cost (92 per cent) and
identified at least one positive aspect of caregiving (95 per cent). Co-resident
supporters were more likely to report opportunity costs and loss of health
well-being. Daughters supporting a frail parent were generally most likely,
and friends or neighbours least likely, to report each type of cost. Supporters
of older people who were both mentally and physically frail reported
significantly greater opportunity and social costs. The benefits of caregiving
were not consistently related to co-residency, relationship of supporter
frailty type. Possible strategies for decreasing the costs and increasing
benefits of caregiving are discussed.
At a time when the proportion of full-time permanent jobs is decreasing and there is evidence of a growth in ‘peripheral’ forms of work, it is important to review the position of older workers, both men and women. Using data from the Labour Force Survey of 1984, it is shown that, while the employment rate falls sharply in the ten-year period prior to state retirement age, it is only those of post-retirement age who are disproportionately represented in peripheral forms of work. It is suggested that some ‘peripheral’ forms of work allow greater flexibility in age of retirement than permanent full-time jobs. While there are clear gender differences among those of pre-retirement age, with a higher proportion of women than men in peripheral jobs, there is a marked erosion of these gender differences amongst men and women who work beyond state retirement age.
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