Professor Alistair Burns and Professor Martin Rossor | NHS England
It is important to plan for the future but there is some thinking and planning to be done before we arrive there.
The focus of research has shifted significantly away from established and moderately severe Alzheimer’s disease to the much earlier stages of the illness and in some cases when symptoms are very mild or even absent. People have called this “Prodromal” Alzheimer’s disease or “Asymptomatic” Alzheimer’s disease.
The opportunities for Alzheimer’s disease are significant in terms of potentially identifying people at risk, elucidating pathological mechanisms, perhaps helping predict who may respond to treatment allowing us to target interventions.
Giebel, C.M. et al. Costs of formal and informal care at home for people with dementia: ‘Expert panel’ opinions from staff and informal carers. Dementia. Published online before print August 22, 2016
Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers.
The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette.
Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.
The Deep and Frequent Phenotyping Study will explore improvements in biomarker research and the development of tests to detect Alzheimer’s Disease early on. This research programme will be funded by the National Institute of Health Research (NIHR) and the Medical Research Council (MRC).
“The Deep and Frequent Phenotyping study will recruit 250 volunteers from existing study cohorts led by the Dementias Platform UK”.
The ultimate aim is to improve the success rate of clinical trials for treatments in Alzheimer’s Disease – many of which have failed – probably due to the interventions under investigation starting a too late a phase in disease progression, after irreparable damage has taken place.
The biomarkers and tests under investigation will include:
Monitoring alterations in movement and walking (“gait”) assessments, using wearable devices.
Ophthalmological assessments of the retina.
Magnetic Resonance Imaging (MRI) brain scans.
Magnetoencephalography (MEG) to measure the magnetic fields produced by…
This briefing outlines the challenges in developing new drugs to treat dementia, and provides an overview of UK and international research activities to accelerate progress in this field.
The key points in this POSTnote are:
Current drug treatments marginally alleviate symptoms. Psychosocial interventions provide valuable support but access to them is patchy.
The development of drugs that address the underlying diseases is challenging due to their complexity.
Investing in research and development on dementia drugs is financially risky for the pharmaceutical industry. Drug development is an expensive and slow process and there has been a high failure rate in developing drugs. as they fail to yield positive results during clinical trials.
Understanding dementia requires analysis of large amounts of data and therefore a collaborative approach. A robust regulatory and legal framework is needed for privacy, data access and data standardisation so that study outputs can be shared.
There are new UK and international initiatives working to accelerate research and support collaboration. There are over ten potential disease-modifying drugs in development that may be available in the next five years. Stakeholders call for continued funding to ensure that the value of current investment is realised.
The first disease-modifying drug will be expensive and will not treat all types of dementia. There is growing consensus that treatment needs to start as early as possible, potentially even before symptoms emerge. Clinical implementation will be practically and ethically complex.
A healthy and active lifestyle may reduce an individual risk of developing dementia. While further research is needed, improving public health could reduce the number of new cases in the long term.
Department of Health | Published online: 16 August 2016
For many of us, the first time we hear about dementia might be when an elderly relative is rushed to A&E for something seemingly unrelated. How alert is your hospital to dementia? What is the prognosis for those who are admitted? How long are they likely to stay?
O’Connor, C.M. & Low, L-F. The Conversation. Published online: 8 August 2016
What is the best way to respond?
First, it’s important to stay calm. If you get upset, the person with dementia may too. Remind yourself that the person isn’t asking the questions to annoy you, but because they have a condition that causes damage to their brain.
Try to understand if there is an underlying need the person is expressing through their question. Are they anxious, worried, confused, hungry, tired?
You should respond in a way that works with the person’s current reality and frame of mind. For example, if the person believes their long-deceased husband is still alive, asking them a question such as “what does your husband do for work?” is more likely to calm the person down than if you remind them he has passed away.
It’s also good to use the environment to support your answer. For instance, in the first example above, the wife could buy a calendar, a clock, and a whiteboard, and set them up in the kitchen where they will be seen by her husband every morning. Appointments can be written on the calendar, and the whiteboard could be updated with the day, date, and schedule for the day.
An intervention is something that aims to make a change and is tested through research. For example this might be giving a medical treatment or drug, providing a counselling or care service, improving a person’s environment or giving people information and training.
The summaries look at:
What the intervention is
Why is it important for people with dementia and family carers?
Does it work?
Is it value for money (is it cost effective)?
How much does it cost?
The toolkit will help those planning and shaping services and treatments for people with dementia and their carers make informed decisions about which services and treatments to provide and how much they cost.
NHS Health Education England. Published online: August 2016
The number of people with dementia of Black, Asian and Minority Ethnic (BAME) origin is expected to rise significantly – a seven fold increase over 40 years compared to a two fold increase in the number of people with dementia across the whole UK population in the same period.
t is recognised that within the BAME communities there is low awareness of dementia and low numbers of people accessing dementia services. The ‘Prime Ministers Challenge on Dementia 2020’ outlines the need to reduce variation in dementia care, support and access across age, gender, and ethnicity. It commits to “an increase in the numbers of people of Black, Asian and Minority Ethnic origin and other seldom heard groups who receive a diagnosis of dementia” and greater provision of culturally competent care, with staff better able to meet the diverse needs of people with dementia.
The following Implementation Plan called for Health Education England to commission a film for health and social care providers that focuses on the specific needs of the African Caribbean community within the care process.
‘Finding Patience’ has been developed with input from experts across the system* and follows Patience and her family as they recognise and come to terms with her dementia and ultimately seek help.