Dementia prevalence prediction 2018
This day, every year Alzheimers Disease International release their latest World Alzheimer Report 2018. This year’s report looks at the topic of dementia research and brings together 21 of the global leading lights in all areas of dementia research.
Unusually this report is not written by academic staff but has been written by renowned journalist and broadcaster Christina Patterson (of Time Magazine, The Guardian and The Sunday Times) and discusses some of the complex questions surrounding dementia research. It looks particularly at the hopes and frustrations for research asking why in over 20 years we have had no significant breakthroughs. You can download the report from the link below:
The state of the art of dementia research: New frontiers
The report stresses the urgent need for increased and sustainable funding for dementia research and calls on governments to commit to a minimum of 1% of the societal cost of dementia to be dedicated to research. In 2018 the global societal cost was US$1 trillion.
Alzheimer Scotland’s Chief Executive Henry Simmons has also released a message for today about the situation more locally in Scotland. You can read his message here.
September is World Alzheimers Month so let’s make an effort to ensure that nobody faces dementia alone and that we do more work to prevent dementia tackle the causes of all dementias in the coming years
At the end of August, 10 charities published the findings of a shared workshop they had on the topic of incontinence which had taken place in December 2016. The resulting report which is called “My bladder and bowel own my life.” A collaborative workshop addressing the need for continence research” recommends tackling the stigma of incontinence and funding research into this often ignored issue. This new report describes the impact of continence issues on patients with long-term conditions and older people as discussed by the workshop participants and makes 8 clear recommendations for researchers, research funders, policy makers, commissioners and others in a position to make research into urinary and faecal continence problems more of a priority.
Research into urinary and faecal continence problems have been identified by patients, carers, family members and health and social care professionals as one of the key areas where further research is needed. This is because there are are a lot of areas in this field where further research could be done to improve the quality of life for people with a variety of conditions and circumstances, such as long-term neurological conditions and terminal illness. The 10 charities suggest that more research is needed into:
- the patient experience
- health economics
- clinical research into self-management techniques, co-morbidities, continence assessment and products, the impact of education, combined urinary and bowel continence research, side-effects and the interaction of medication prescribed for other long-term health conditions and their effect on incontinence symptoms.
- fundamental research to better understand bladder and bowel function
- the effect of non-surgical interventions.
Quite a knowledge gap, that needs to be tackled particularly since the NHS estimates that between 3 and 6 million people in the UK have some degree of urinary incontinence. Studies also suggest that in the UK “major faecal incontinence” affects 1.4% of the general population over 40 years old and that constipation affects between 3% and 15% of the population. It’s also widely believed that continence problems are under-reported so these figures could be quite a bit off as the numbers seeking treatment might be as low as 20% of those affected, which would mean around 15 million around a 1/5th of the UK population at any one time may be troubled by poor continence symptoms.
If you are affected by incontinence it is probably a good idea to be aware of NICE’s Topic Page on Urinary Incontinence and their Urinary incontinence in women interactive flowchart and to take some time to look at The Urology Foundation’s Urology Health Pages
This a bit of a departure from my usual Blog topics nonetheless I think its important that as may carers as possible in Scotland know about this change to benefits that starts next week.
Scotland’s Cabinet Secretary for Social Security and Older People, Shirley-Anne Somerville release the following statement this week about Scotland’s new carers allowance supplement which starts from Thursday 13th September 2018.
Eligible carers in Scotland will receive the first payments of the new Carer’s Allowance Supplement in recognition of the important contribution that they make to our society. These payments will mean that people in Scotland, who were in receipt of Carer’s Allowance from the UK’s Department of Work and Pensions (DWP) on the qualifying date of Monday 16 April will receive a supplementary payment of £221. This payment will be issued automatically to all eligible carers. Just for once there is no need for a form to be completed. As this is the first payments Social Security Scotland will make the Scottish Government want to make sure these payments are paid safely and securely to people. For that reason payments will nit be immediate but will come over a phased period. The vast majority of payments will be made by the end of September, with more complex cases being completed by Thursday 15 October. If you are already receiving Carers Allowance, payment will be made using the same method that you were using to get their Carer’s Allowance from the DWP.
In advance of payments being issued, carers will receive a letter explaining the payment to them and a leaflet to introduce Social Security Scotland as the new Scottish Government agency that will deliver these payments. We expect people to start receiving their letters from the week beginning 10 September. The letter will also contain details of where people will be able to find information online and a Freephone telephone number should they wish to speak with someone about this payment. The Scottish Government are keen to help carers understand the process and have shared the following links to three clips of film introducing Social Security Scotland, the policy intent behind Carer’s Allowance Supplement and details on the way in which this benefit will be delivered:
Introduction to Social Security Scotland
For more about Carer’s Allowance Supplement, look at the fact sheet given here.
For more about why income maximisation is important to all carers, not just those in Scotland I thought this page from Slough Carers support explained this well. https://sloughcarerssupport.co.uk/finance/finances/
September 2018 sees the start of the 7th. World Alzheimer’s Month, #WAM2018, an international campaign to raise dementia awareness and challenge stigma. During
this time, Alzheimer associations and other stakeholders around the world organise advocacy and information provision events, as well as Memory Walks, media appearances and fundraising days.
World Alzheimer’s Day (on 21st September every year), is usually the day an new World Alzheimers Report is published so look out for it. No indication so far of what this year topic might be. There is a Alzheimer’s Disease International Campaign page at https://www.worldalzmonth.org/ so if you want to do something to help have a look at the Toolkit and take up one of their ideas
OR join an Alzheimers Scotland memory walk. Information on Scotland’s Memory Walks can be found here!
If you are elswhere in the UK the memory walks are supported the Alzheimers Society. You can find your local walk by going to https://www.memorywalk.org.uk/find-a-walk/
Also this week a new resource from NHS Education for Scotland has been launched, Called “Older Adults Module: Promoting Positive Psychological Well-being” this new e-learning module for Scottish Health and Social Care staff working with older adults aims to develop their knowledge of promoting positive psychological well-being. It is aimed at all staff working with older adults across the NHS and social care and can be found at via NES via Turas Learn
Providing good end of life care is an NHS priority. Good end of life care tries to ensure that people can die with dignity, with access to appropriate specialist care wherever that person chooses to die. There is no arguement that referrals to hospice-based specialist palliative care would benefit older people most but it appears from a large National Institute of Healthcare Research study that people aged under 50 years were referred to hospice specialist palliative care about a month before people over 75 years.
The majority of people referred for specialist palliative still have cancer which you might expect but specialist palliative care should be available to people with other illnesses that may be equally difficult to manage. However, if you are person with dementia or are in the terminal stages of a stroke were referred about nine days before death compared to much earlier for those with other diseases.
The NIHR study, which you can download here, is the first to provide detailed data on patterns of referrals to UK hospices in England and Wales. I am not sure whether something similar has been done for Scotland or Northern Ireland.
The study clearly highlights variations in referral patterns that depend on your age, disease and where you live. It also highlight a need to better understand the reasons for the delay, which looks suspiciously ageist to me amongst services whose priority you would think would be older people.
Something else new this week. Have you downloaded the FREE Cochrane Library App?
Get the latest evidence when and where you need it. See Available for iPads, iPhones, and Android.
If you are working in a Care Home on Scotland last week was quite important because the Care Inspectorate has announced that they are changing how they are going to inspect care homes for older people. Their new inspections will reflect the new Health and Social Care Standards and will focus more on outcomes and experiences for people. More details about the new regime for inspections are available from the Quality Framework for Care Homes for Older People which you can finds by clicking HERE
You can also find out what’s changing by watching their short video
Also at the end of last month the RCN launched an online resource to support nursing care in older peoples care homes. This resource allows you to follow a resident’s care home journey through from pre-admission to end of life. Each section demonstrates the role of nursing staff when supporting the resident, their families and nursing colleagues at a particular stage of the resident’s journey. It also provides real life scenarios signposting you to high quality, evidence based resources to answer the clinical questions that frequently affecting those caring for older people. You can check it out by CLICKING HERE
In Scotland, the world’s biggest arts festival starts today. As always I’ll spend some time through there over the month and try and take in some shows/events etc. with my family.
So what might be worth seeing that focuses on Older People? Well, these aren’t my recommendations this list comes from Luminate, Scotland’s creative ageing organisation, which runs a diverse programme of creative events and activities throughout the year. So they know better than me what to see. So here is their list of recommendations.
What to See in Edinburgh 2018
I’m intrigued by one in particular… Who Do You Want to Wipe Your Bum?
Which features Dr Anna Schneider of Edinburgh Napier University highlighting a few things worth thinking about; considering you’ve got an 80% chance of needing care at the end of your life.
I suspect she will have to say something about this Global Health Workforce Labor Market Projections for 2030