YoungDementia UK is launching three films to help educate and inform people about young onset dementia. We hope our Adapt films will be of particular use and interest to people who have been newly diagnosed and those who support them.
The first three films in the collection feature people affected by the condition discussing – Being a parent, Employment and keeping active and Who and how to tell:
Adapt – Being a parent features people affected by young onset dementia discussing how they shared the news of their diagnosis with their children, how they reacted and the impact the diagnosis has had on their family relationships.
Adapt – Who & howto tell features people affected by young onset dementia discussing how they shared the news of their diagnosis with family and friends. They talk about how people reacted to the news and share advice for others in a similar situation.
Adapt – Employment & keeping active features people affected by young onset dementia discussing how the condition had an impact on their working lives and what they do now to keep active and engaged.
The films were funded by DEEP and the Shanly Foundation and are available for use by anyone who would like to share them, particularly at training courses, events and conferences.
Objectives: Over the last 10 years there has been a multitude of studies of psychosocial interventions for people with dementia. However, clinical services face a dilemma about which intervention should be introduced into clinical practice because of the inconsistency in some of the findings between different studies and the differences in the study qualities and trustworthiness of evidence. There was a need to provide a comprehensive summary of the best evidence to illustrate what works.
Methods: A review of the systematic reviews of psychosocial interventions in dementia published between January 2010 and February 2016 was conducted.
Results: Twenty-two reviews (8 physical, 7 cognitive, 1 physical/cognitive and 6 other psychosocial interventions) with a total of 197 unique studies met the inclusion criteria. Both medium to longer-term multi-component exercise of moderate to high intensity, and, group cognitive stimulation consistently show benefits. There is not sufficient evidence to determine whether psychological or social interventions might improve either mood or behaviour due to the heterogeneity of the studies and interventions included in the reviews.
Conclusion: There is good evidence that multi-component exercise with sufficient intensity improves global physical and cognitive functions and activities of daily living skills. There is also good evidence that group-based cognitive stimulation improves cognitive functions, social interaction and quality of life. This synthesis also highlights the potential importance of group activities to improve social integration for people with dementia. Future research should investigate longer-term specific outcomes, consider the severity and types of dementia, and investigate mechanisms of change.
Incremental physical activity, even at light intensity, is associated with larger brain volume and healthy brain aging, according to new research | JAMA Network Open | via scienceDaily
Considerable evidence suggests that engaging in regular physical activity may prevent cognitive decline and dementia. Active individuals have lower metabolic and vascular risk factors and these risk factors may explain their propensity for healthy brain aging. However, the specific activity levels optimal for dementia prevention have remained unclear.
The new 2018 Physical Activity-Guidelines for Americans suggest that some physical activity is better than none, but achieving greater than 150 minutes of moderate-to-vigorous (MV) physical activity per week is recommended for substantial health benefits.
Using data from the Framingham Heart Study, researchers found that for each additional hour spent in light-intensity physical activity was equivalent to approximately 1.1 years less brain aging.
According to the researchers, these results suggest that the threshold of the favorable association for physical activity with brain aging may be at a lower, more achievable level of intensity or volume.
Beth Pritty, Danielle De Boos & Nima Moghaddam | Factors influencing the transition experience of carers for persons with dementia, when the person with dementia moves into residential care: systematic review and meta-synthesis | Aging & Mental Health | 2019 | published online 12 April 2019
Aims: To understand factors influencing the experience of carers for people with dementia, when that person moves from living in the community to living in residential care. Specifically, we aimed to identify facilitators and inhibitors of carer adjustment during this transition.
Method: A systematic search of CINAHL, EMBASE, PubMed, and PsycINFO databases was conducted. Nine qualitative articles published between 2001 and 2017, based on the experiences of 141 carers, were included. Thematic analysis was applied to the data, with the concepts of transition inhibitors and facilitators being used to structure the analytic process.
Results: Analysis produced five themes, representing factors that could affect carer experiences of the focal transition-process: modifying the difficulty of this process according to their presence or absence. The themes were (1) Connection, pertaining to the carer feeling connected to the person with dementia and professionals during this transition; (2) Informed & Informing, relating to exchange of information between the carer and facility staff or health professionals; (3) The facility: welcoming & skilful, dealing with carer perceptions of the facility and their confidence in the staff; (4) It’s What You Make of It, discussing the meaning the carer made of the admission and the impact this had; and (5) Sharing Responsibility, addressing how carers were affected by the perceived sharing of responsibility for care-provision.
Conclusions: A supportive network has a significant role to play in facilitating this transition for carers. However, further research into what carers would find useful during this time is needed.
This paper provides a summary of the quality indicators available to assess optimal palliative care in older people with dementia, and identifies the major gaps related to recommendations for which indicators remain to be developed | Palliative Medicine
A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.
To identify and critically evaluate quality indicators for end-of-life care in dementia.
We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.
We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.
Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.
Aim: To investigate the factors influencing provision of PC services for people with advanced dementia.
Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.
Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.
Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.
Dementia UK have produced a new leaflet with the Royal College of General Practitioners, explaining GP online services for people who care for someone with dementia. Patients can now book appointments, manage repeat prescriptions, and see test results online.
Online GP services are designed so patients can:
make, change or cancel GP appointments, without having to telephone the practice. Patients can access the online services 24 hours a day, see what appointments are free in the coming days, and choose to see a particular doctor or nurse
request repeat prescriptions. Patients can also see a list of regularly prescribed medication, the prescribed dose, and when their next prescription is due
look up test results, as well as monitor their health by comparing with historic test results
see the medical notes on file, including diagnoses, any allergies, immunisations, and past surgery.
see their medical notes wherever they are. This can be useful if medical attention is required when on holiday or traveling
Having contact with a nurse who understands dementia and has the time to get to know their situation could improve carers’ confidence and help them to feel supported | National Institute for Health Research | University of York
Admiral Nursing is the only nursing service that specifically focuses on supporting carers of people with dementia in the UK. Research carried out by the University of York found that Admiral Nurses are successfully targeting carers with the most complex needs
The research team, from York’s Social Policy Research Unit and Centre for Health Economics, looked at information routinely collected by Dementia UK which showed that, on average, the needs of carers with an Admiral Nurse reduced over time. However, the data were not detailed enough to show what caused this improvement. In interviews and focus groups, carers themselves said that the sorts of support provided by Admiral Nurses could positively influence their health, quality of life and confidence in caring.
The research team followed this up with a survey, completed by 346 current carers of people with dementia, which demonstrated the heavy burden that dementia carers carry, the low levels of support that they get from health and social care services and the financial impact on carers and their families when they have to pay for help.
Health Education England e-Learning for Healthcare (HEE e-LfH) has been working with the University of Bradford to review, add new content and update sessions within the e-Dementia e-learning Programme
The programme about dementia care has been designed to enhance the training and education of the health and care workforce. It focuses on the essential knowledge and skills needed to support and enable people living with dementia and their family carers to live as well as possible, wherever they live.
e-Dementia will also be of interest to those responsible for training and educating the health and care workforce. It can be used in a variety of ways including as part of induction; to structure reflective practice with individual staff and teams; for self-paced learning; and to revisit as a form of refresher training.
As part of the e-Dementia update, 14 new sessions have been added and 12 sessions have been retired from the programme.
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.