With renewed inspiration from the recent HelpAge International update on the situation for older adults after the Nepal earthquake (see my post on Rising from the rubble: Nepal earthquake one year on), I decided to publish my recent research on the topic. Continue reading
Dispelling respite myths for people with dementia and their carers
ReThink Respite is a new online resource aiming to support people with dementia and their carers and help them to better understand the benefits of respite services.
“There is plenty of evidence to show that respite can sustain carers to continue in their caring role and keep the person with dementia at home for longer, and yet the proportion of carers that use available respite and other support programs is low,” according to project leader, Dr Lyn Phillipson.
“The ReThink Respite resource will help people better understand respite services by dispelling myths and educating carers of the benefits of respite services. Ultimately, we want to increase uptake and inform and shape service delivery of respite in the community,” she adds.
Read more at: https://news.agedcareguide.com.au/2016/04/05/dispelling-respite-myths-for-people-with-dementia-and-their-carers/
Visit the ReThink Respite webpage at rethinkrespite.com
Carnegie-Mellon University-College of Engineering recently conducted a survey of 1,900 US adults on care for their aging parents, as background for a project in fall prevention.
It’s finally here!
Please have a read of the World Health Organization European eHealth report and share it with those who would be interested. In particular, you may find the case example on page 71 interesting, where big data for dementia research and treatment is discussed. Or the case example on page 36 about eHealth supporting aged care and carers.
If you like it, please share it 🙂
This post is on the rarer forms of dementia, which make up the minority of dementia diagnoses. These also include reversible and treatable dementias, such as those resulting from infectious diseases or nutrition deficiencies. As Alzheimer’s disease is the most commonly diagnosed form of dementia, it receives the majority of focus in awareness raising, research, and funding for treatment and prevention. This can leave those with the rarer forms of dementia without much information on their dementia type or options for treatment, fewer disease-specific support options, and feeling frustrated and isolated. My hope is that this post will be informative and raise your awareness on other types of dementia that individuals and families face. Continue reading
This information comes to us from Accelerate Cure/Treatments for Alzheimer’s Disease out of Washington, DC in USA. The information is based on a 2015 research article in the journal Aging. The importance of this article lies in the distinction between three subtypes of Alzheimer’s disease, which has implications for understanding the cause and treatment of the types.
New Study Finds Alzheimer’s Disease Composed of Three Distinct Subtypes
A study from UCLA has found that Alzheimer’s disease, which has long been considered as one disease, may actually consist of three distinct subtypes: inflammatory, non-inflammatory, and cortical. In fact, the cortical subtype may be a different condition than the other two.
The journal article in Aging offers the entire article text with free access but may be a bit heavy to read if you are not used to reading academic research. The UCLA news page provides a news article on the research that may be easier to read.
The expected impact of the project will influence the scientific, clinical and industrial communities across Europe and internationally to improve the healthcare of dementia patients. This will both improve patients’ quality of life, and also reduce the burden on carers and the costs of supporting people with dementia.
The “Virtual Physiological Human: DementiA Research Enabled by IT” (VPH-DARE@IT) project aims to provide a systematic, multifactorial and multiscale modelling approach to understanding dementia onset and progression and enable more objective, earlier, predictive and individualised diagnoses and prognoses of dementias to cope with the challenge of an ageing European society.
This information comes to us by way of US Against Alzheimer’s and Alzheimer’s Disease International. USAgainst Alzheimer’s is a US organization committed to stopping dementia. Alzheimer’s Disease International is the federation of all Alzheimer’s Associations around the world, and collaborates with the World Health Organization. Continue reading
This past January, the European prevention of Alzheimer’s dementia consortium (EPAD) launched and will run until 2019. Their goal is to promote quality research on the prevention and treatment of Alzheimer’s disease and other dementias and to accelerate research and the search for an effective treatment.
Today, research increasingly focuses on ways to prevent the onset of Alzheimer’s in the first place. The EPAD project is pioneering a novel, more flexible approach to clinical trials of drugs designed to prevent Alzheimer’s dementia. Using an ‘adaptive’ trial design should deliver better results faster and at lower cost.
Considerable effort has gone into the search for a cure for Alzheimer’s. However, it is now well known that signs of Alzheimer’s disease can be found in the brain decades before the first symptoms appear. Researchers are therefore increasingly focusing their efforts on finding ways of stopping the disease in its tracks during this pre-symptomatic phase to prevent the disease entirely or at least delay the onset of symptoms.
Challenges here include the difficulty of identifying people who are likely to develop Alzheimer’s dementia, our poor understanding of these earliest stages of the disease, and a lack of flexibility in the way clinical trials are carried out.
The EPAD project is addressing these problems in a number of ways. Firstly, it will draw on existing national and regional registers of people at risk of developing Alzheimer’s dementia to create a single, pan-European EPAD register of around 24 000 people. Of these, the 6 000 deemed to be at greatest risk of Alzheimer’s dementia will be invited to join an EPAD cohort of at risk subjects. This group will undergo standardised tests and follow-up. Finally, the project will select around 1 500 people from this EPAD cohort to take part in early stage ‘adaptive’ clinical trials of drugs designed to prevent Alzheimer’s dementia.
The EPAD project does not operate alone. Together with IMI’s EMIF-AD and AETIONOMY projects, it forms the IMI Alzheimer’s disease platform. It is also working closely with other, similar initiatives worldwide, including the US-based Global Alzheimer’s Platform.
In addition, all data collected from the EPAD cohort and trial will be made publicly available for analysis to help researchers everywhere improve their understanding of the early, pre-dementia phase of Alzheimer’s disease.
Ultimately, the hope is that this project will reinvigorate the development of treatments for one of the most challenging diseases facing our ageing societies.
The EPAD website is devoted to inform different audiences including the scientific community, companies, people with dementia, families and carers, Alzheimer associations and the general public, about the project’s existence, its progress and its achievements.
The European Prevention of Alzheimer’s Dementia (EPAD) is a research initiative to improve the understanding of the early stages of Alzheimer’s disease and how it leads to dementia. The project provides a platform to investigate new treatments that aim to prevent or delay the onset of clinical symptoms in people at risk of developing the condition. It involves more than 36 organisations across Europe including universities, pharmaceutical companies and patient organizations.
Check out their website here:
This website was brought to my attention through a Gerontological Society of America community forum. It was a message by Alan Stevens, the Holleman-Rampy Centennial Chair in Gerontology and Director of the Center for Applied Health Research at Baylor Scott & White Health in Temple, TX.
This website is a free resource and provides a toolkit with some great information describing evidence-based programs, how to select and implement, and evaluate these programs, and more. Click on the title below to go to the website.
As part of the NIH-funded Community Research Center for Senior Health, we have created a new web-based resource in the arena of evidence based programs (EBPs) – Evidencetoprograms.com
The website is designed for community-based organizations who are interested/mission driven to provide health interventions for seniors. This tool can be used by seasoned professionals and those less familiar with the topic alike. Users can explore paths for learning how to select an EBP as well as how to implement a selected program. This is also a valuable educational tool for universities.
From the website:
WHAT DOES IT MEAN FOR A PROGRAM TO BE EVIDENCE-BASED?
Health promotion programs that have been found to produce positive outcomes based on the results of rigorous evaluations are often termed “evidence-based.” To be identified as an evidence-based program (EBP), an intervention or program must be thoroughly evaluated by researchers who are able to attribute positive outcomes to the intervention itself.
When you look at various programs to see if they are evidence-based, you will come across many evaluation study designs. You do not need to be an expert in research methods to understand these study designs, but it is useful to understand some basic terms. The following terms are used when describing participants in studies.
- Experimental group – Individuals in the experimental group are taking part in the program that is being evaluated in the study.
- Comparison group – Individuals in the comparison group are not taking part in the program that is being evaluated. They may not be enrolled in any program or they may be enrolled in some alternative program. Members of the comparison group may or may not be similar in characteristics to the members of the experimental group.
- Control group – Individuals in the control group are not taking part in the program that is being evaluated; however, they may be enrolled in some alternative program. Members of the control group are likely similar in characteristics to members of the experimental group.
When evaluation researchers have identified evidence supporting a particular program, they will often publish their findings in peer-reviewed scientific journals. Publishing their findings allows experts in the field who are not associated with the evaluation to examine the evaluation and determine if they agree with the methods used and with the conclusions drawn about the effects of the program. Evaluation researchers may also submit evidence to research organizations and federal agencies that will examine the evidence and approve or endorse the programs they find to have solid bases of evidence. This approval or endorsement communicates to others in the field that these programs have met various standards of effectiveness (see Identifying Evidence-Based Interventions for more information).
Check out Community Research Center for Senior Health. Toolkit on Evidence-Based Programming for Seniors for more information!!
This is a follow-up to my other post, Aging and the UN Sustainable Development Goals. In that post, I discussed the launching of the Goals and the UN Population Fund’s summary of the goals – which disappointedly did NOT address aging or older adults. In this post, I look deeper into the Goals, reading all 17 and their 169 associated targets to see where aging is specifically addressed. I think I’m gonna need a coffee to get through them all 🙂 Continue reading
This upcoming Friday, October 9, 2015, there is Culture Night in Copenhagen!
The Center for Healthy Aging out of Copenhagen University is offering insight into the latest research from a multitude of different angles – there is something for everyone. Continue reading
Last month I wrote a post about what the Clock Drawing Test is, how it is scored, what that means, and new research on a home-based version that is done on a touchscreen. It’s a great post, and I’m not just saying that because I wrote it 🙂 It already has had 150 views – and is my second most popular post (after my post about Coloring as a Purposeful Activity).
Well, today, another way that technology is improving the Clock Drawing Test has come across my radar. This time, researchers are developing a method that uses a digital pen when drawing the clock. While the earlier article I posted describes using a tablet or touchscreen to analyze how the test is drawn in real time (how long it takes between writing numbers and placing the hands, where they are drawn, and can even replay the drawing process so that doctors can look for further abnormalities), this new one, using the digital pen, essentially does similar things. The pen has a small camera on it that also looks at how long it takes between strokes and to complete the drawing, movements, and the process as a whole. The Anoto Live Pen is from a Swedish company, Anoto. Continue reading
You may have heard of the clock test before. It is commonly included in the battery of tests when making a dementia diagnosis. More than one test is used because doctors are first trying to rule out other causes for the cognitive impairments (such as tumors, stroke or other changes to the brain), to determine if the dementia symptoms could be reversible (such as with an infection or vitamin deficiencies), and to differentiate the type of dementia (if it is vascular, frontotemporal, etc.). Actually, the dementia test work-up is really a bunch of tests to rule out causes for the cognitive changes, and only when no other cause can be found, a diagnosis of dementia or probable dementia is given (or at least that is the ideal way the tests are used and a diagnosis of dementia is arrived at).