Research finds that goal setting may help people with dementia work with healthcare professionals and caregivers to identify and achieve realistic goals that are most important to them. | Journal of the American Geriatrics Society | News Medical
New research published in the Journal of the American Geriatrics Society has concluded that “goal attainment scaling” (GAS) can be used in clinical care to help people with dementia and their caregivers set and achieve personalised health goals.
The researchers developed a process for using GAS to set goals and to measure whether participants reached those goals. In a first phase of the study, they tested goal setting with 32 people who had dementia and their caregivers.
In the next phase, the dementia care managers helped an additional 101 people with dementia and their caregivers set care goals. The research team used a scale to measure how well the participants achieved their goals 6 and 12 months after setting them.
Most often, the goals focused on improving quality of life for the person with dementia, followed by caregiver support goals. Some commonly chosen goals for the person with dementia included:
Maintaining physical safety
Continuing to live at home
Receiving medical care related to dementia
Maintaining mental stimulation
Remaining physically active
Commonly chosen caregiver goals included:
Maintaining the caregiver’s own health
Minimizing family conflict related to dementia caregiving
Innovative new technology could enable people with dementia to receive round the clock observation and live independently in their own homes, a new study reports. | University of Surrey | via ScienceDaily
Researchers from the University of Surrey in partnership with Surrey and Borders Partnership NHS Foundation Trust have developed state of the art Artificial technologies, powered by machine learning algorithms, to monitor the wellbeing of people with dementia.
The study known as Technology Integrated Health Management (TIHM) for dementia, uses the ‘Internet of Things,’ a network of internet enabled devices (sensors, monitors and trackers) installed in homes, which can detect an immediate crisis as well as changes in people’s health and daily routines. Any change could indicate a potential health issue and if identified early could prevent a person from becoming seriously unwell and requiring emergency hospital admission.
The well-being of people with dementia can also be monitored using this innovative technology which can detect agitation and irritability.
Multidisciplinary rehabilitation is increasingly accepted as valuable in the management of chronic disease. Whereas traditional rehabilitation models focussed on recovery, maintaining independence and delaying functional decline are now considered worthwhile aims even where full recovery is not feasible.
Despite this, rehabilitation is notably absent from dementia care literature and practice. People with dementia report frustration with the lack of availability of structured post-diagnosis pathways like those offered for other conditions.
Alternative terms such as ‘re-ablement’ are used to refer to rehabilitation-like services, but lack an evidence-base to guide care.
This commentary will discuss possible reasons for the resistance to accept multidisciplinary rehabilitation as part of dementia care, and identifies the value of doing so for people with dementia, their families, and for health professionals.
Pickett J, Bird C, Ballard C, et al. | A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025 | International Journal of Geriatric Psychiatry 2018; 1–7
A broad-based taskforce of researchers, clinicians, UK funders of dementia research, people with dementia, and carer representatives was convened to generate consensus on research ambitions in prevention, diagnosis, intervention, and care for people with dementia.
Five goals and 30 recommendations that align with current national dementia strategies and plans were produced. A 10-point action plan was developed to support the delivery of these goals.
National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them.
Alzheimer’s Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research.
The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda.
By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.
Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia.
Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.
Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.
Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.
Published to coincide with World Alzheimer’s Month this report has been produced on behalf of the Dementia and Housing Working Group, and supported by partners Homeless Link, Foundations and the Life Story Network
The report and the accompanying Executive Summary set out the key role housing providers, and in particular social housing providers, can play in supporting people living with dementia to stay independent in the home of their choice for as long as possible. Its findingse are divided into ones directly relevant to those working in the housing sector and those that provide a platform for wider application; for example, to become more dementia-friendly.
Although the majority of people with dementia wish to age in place, they are particularly susceptible to nursing home admission | Geriatric Nursing
Nurses can play an important role in detecting practical problems people with dementia and their informal caregivers are facing and in advising them on various ways to manage these problems at home.
Six focus group interviews (n = 43) with formal and informal caregivers and experts in the field of assistive technology were conducted to gain insight into the most important practical problems preventing people with dementia from living at home. Problems within three domains were consistently described as most important: informal caregiver/social network-related problems (e.g. high load of care responsibility), safety-related problems (e.g. fall risk, wandering), and decreased self-reliance (e.g. problems regarding self-care, lack of day structure).
To facilitate aging in place and/or to delay institutionalization, nurses in community-based dementia care should focus on assessing problems within those three domains and offer potential solutions.
46% of patients who are diagnosed with Alzheimer’s disease in Sweden live alone in their homes, in particular older women, researchers report | ScienceDaily
Swedish researchers report in an article published in the Journal of Alzheimer´s Disease that 46% of patients who are diagnosed with Alzheimer´s disease in Sweden live alone in their homes, in particular older women.
The patients who live alone do not receive the same extent of diagnostic investigations and anti-dementia treatment as those who are co-habiting. On the other hand, they were treated more frequently with antidepressants, antipsychotics and sedative drugs.
According to recent statistics, the number of older people who live alone in their homes, especially women, is increasing in high income countries. When an older person is affected by dementia, such as Alzheimer´s disease, they may not have a close relative living with them, which may complicate the course of the disease. Dementia affects their memory and later can lead to their dependency on caregivers.
This paper provides an overview of the role of technology in dementia care, treatment and support by mapping existing technologies – by function, target user and disease progression.
Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings.
The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention.
The second largest number of interventions aims to enhance people’s memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers.
While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely on everyday technologies re-purposed to meet their needs.
Only 2% of people affected by dementia say homecare workers have enough dementia training. | Alzheimer’s Society
An Alzheimer’s Society investigation has exposed a vicious cycle where a lack of dementia training for homecare workers results in intolerable stress for people with dementia, families and carers – and for the homecare workers themselves.
Poor quality homecare is leaving too many people with dementia spending the day in soiled clothing, going without food or water, or ending up in costly hospital or care home admissions when they could have stayed at home, where they want to be, for longer.
The investigation involved a survey of homecare workers with Unison, research into the sector with Skills for Care, Freedom of Information (FOI) requests to all local authorities in England, and a survey of over 1220 people affected by dementia to gather first-hand testimonies about homecare.
Key findings from the survey of over 1220 people affected by dementia include:
Only 2% of people affected by dementia say homecare workers ‘have enough dementia training
Half (49%) of people affected by dementia do not think that ‘homecare workers understand the specific needs of people with dementia’
More than a third (38%) of people affected by dementia do not think that ‘homecare workers know how to treat people with dementia with understanding and dignity