Let’s make it #FairerforCarers

A good news day for care homes. Visiting to Scotland’s care homes can resume and the UK Government announced that for people who are living & working in care homes in England will receive regular COVID-19 tests from Monday 6th. July. The new testing regime will see Staff tested for the virus weekly while residents will receive a test every 28 days. These new measures will be in addition to intensive testing in any care home facing an outbreak or an increased risk of a surge in cases.

Too late you might argue, when you consider a study from the London School of Economics last month found that care home residents in the UK were more likely to die than in any of the other major European country, apart from Spain. The proportion of residents dying in UK homes was a third higher than in Ireland and Italy, about double that in France and Sweden, and 13 times higher than Germany. At least its a positive step in the right direction.

So how about another positive step in the right direction. Today, alongside 91 other organisations Carers UK have written to both the Work and Pensions Secretary and the Chancellor, calling on the government to urgently raise Carer’s Allowance as part of their #FairerForCarers campaign. Carer’s Allowance is the lowest benefit of its kind at just £67.25 a week in England and Wales. It’s slightly higher in Scotland at the equivalent of £76.10 per week so even the whole country matching this would be an improvement.

You can find out more about the campaign at https://www.carersuk.org/news-and-campaigns/campaigns/fairer-for-carers

Is it perhaps time to write or e-mail your MP about this?

See https://www.parliament.uk/get-involved/contact-an-mp-or-lord/contact-your-mp/

#CarersWeek 2020 #MakingCarersVisible

Her Royal Highness, Princess Anne, the Princess Royal; possibly my favourite Royal because she follows the Scotland Rugby Team, through all their ups and downs; has recorded a special message of thanks and support for unpaid carers to mark this year’s Carers Week. The Princess Royal, who is President of Carers Trust talks about the indispensable role of unpaid carers supporting people who cannot look after themselves because of an illness, disability or mental health problem. She also highlights how hard is for the public to see, far less recognise, just what a difference unpaid carers are making every day to improving the lives of others. You can watch her video below just click on the play arrow.

 

New figures released this Carers Week  (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to an estimated 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness since the outbreak began.

You can read the full report here.

I might not be a fan of her political views but this video from Angela Rayner Chair & Deputy Leader of the UK Labour Party and Shadow first Secretary of State contains the message that I would like all current carers to here.

As Angela states I also have had many experiences of being a unpaid carer a well as a paid carer like many nurses and healthcare workers. In times of family distress it is often us that our families turn to with some expectation that we will take control and help no matter what’s going on elsewhere. If you are one of these paid and unpaid carers you have my best wishes, admiration and support. Almost always it’s the paid caring role that’s the easiest.

Carers ARE amazing, but it’s because they HAVE to be! So don’t just be sympathetic and  inspired by what they do take action to ensure carers are visible, valued & supported.

You could star by making a pledge for Carers Week at https://www.carersweek.org/

Matt Hancock the Health Secretary posted a video as well but for me adding that one would be a step too far…

For Carers in Scotland During #Lockdown

Yes folks, this is what I look like! With Dr Barbara Sharp a friend and colleague.

Anyone who knows me will be aware that I have great admiration for everyone who is an informal (unpaid) carer, perhaps because I have been one several times myself.  There are almost seven million informal carers in the UK – almost one in ten people. A figure that is rising. It is often forgotten that 42% of carers are men and 58% are women. There value of the contribution made by carers in the UK is £119 billion per year and without them the NHS and social care system would be overwhelmed many times over COVID-19 or no COVID-19.

So at this time it must be particularly difficult. This Blog is a set of resources for them. Recently, Carers Scotland noted that currently reduced or closed care services meant that family members in Scotland were picking up even more care for older, sick or disabled relatives with many of them feeling overwhelmed and at risk of burning out. See their report HERE . So this seems like the least I can do.

Firstly, you can go to the Carers Scotland Website, where you will find a really useful list of Sources of Help and Advice for Carers in Scotland. To find it CLICK HERE.

Secondly, the Scottish Government’s own carers page is HERE 

Thirdly, If you are looking for advice on mental health, adults and the law there is a really useful guide for families and carers on THIS WEBPAGE  from the Mental Welfare Commission. This page also has Frequently Asked Questions guidance for practitioners and formal carers. (Both guides were released last week).

Finally, my own contribution, the video at the top of the page, alongside the contributions of some of the team I work with @AlzScotCPP  All we have done is available on the Alzheimers Scotland COVID HUB.  Where there are some more videos and the accompanying leaflets for my video and the others which we hope will help. They are useful for many carers not just those looking after someone with dementia!

#StayHome #StaySafe

 

Hidden By The Crowd: Covid Advice for the Learning Disabled and Others

I am writing this really to provide some assistance to some of the groups hidden by the current focus on the health of the population. Clearly the messages for everyone of us at this time#StayHome #StaySafe are really important but there are many people for whom that message is really challenging, for example those with Autism or a Learning Disability. What about those who are vulnerable and isolated or who have a dementia causing illness. So this is for them and those looking after them.

So the resources I want to highlight first are from the Social Care Institute for Excellence.  They ahve produced a set of guides for families and professionals supporting autistic adults and adults with learning disabilities during the coronavirus (COVID-19) crisis. There guides, released on April 17th can be accessed HERE

They have also produced a guide for supporting people who are isolated or vulnerable again release only last week that can be accessed HERE This resource contains a great list of things that you can do during lockdown so what it is suggesting applies much further than the groups it targets. Take a look and you’ll see what I mean.

Regarding people living with dementia and their carers, the Alzheimers Society updated their COVID-19 pages on the 16th of April so you can look at their latest advice by clicking THIS LINK

It is very difficult for society’s marginalised groups at this time. While I can’t cover them all I hope this helps a few people.

As for the @NurseBloggers challenge. It will have to wait until next week. The topic is retention… well that will  interesting when you consider what’s happening just now. Will this encourage people to join health and social care professions or will it put them off… what happens in the next month may well shape the whole sectors future.

Suggestions for Things to Do While Isolating

I am going be quite choosy here and not give a huge long list. So let’s start with a brilliant initiative called Luminate@Home. Luminate runs a diverse range of activities and events that celebrates our creative lives as we age. It holds avery successful annual festival here in Scotland that usually takes place in May. In response to the fact that lots of older people at home or in care homes right now who are having to isolate from the wider world for a while they have launched a new programme of online creative activities

Luminate@Home are uploading short films every Tuesday and Friday at 2pm, on Luminate’s facebook page and on their YouTube or Vimeo channels. The films are designed to inspire and guide you through a creative activity that can be done at home or in a care home. The activities are presented by professional artists and feature different arts forms including crafts, poetry, music and dance. The films will be left online so you can access them at any time.

My next suggestion is a Scottish Care initiative called Tech Device Network. They are inviting businesses, organisations and individuals with spare technological devices to donate them to care services. All you have to do is click here to get in touch and tell them what you are able to donate. Scottish Care will then connect you with care services who would benefit from receiving the devices and jointly will arrange delivery/collection. As they state at this time this could have significant benefits for mental wellbeing, reducing distress and maintaining connections with loved ones for a vulnerable population and those supporting them. A meaningful way to connect our communities at this time and hopefully one with long term positive outcomes.

Last suggestion is from the Centre for Better Ageing who put up a useful blog post about keeping active in isolation. Its at https://www.ageing-better.org.uk/news/how-we-can-all-keep-active-home-during-coronavirus-crisis

Remember everyone its important to keep up your strength and balance at this time. Let’s get back out fitter than we were when we got locked-down.

That would be a positive achievement!

 

 

 

#britgerontology Statement on COVID-19

Well, I said I thought I would post something about Coronovirus in my next Blog, so I’ll keep my promise.

This however does not come from me this is the statement released on the 20th. of March 2020 from the President and Members of the National Executive Committee of the British Society of Gerontology which I am a member of. This statement was made in relation to the unfolding political, policy and media rhetoric concerning age divisions that have emerged during the response to the COVID-19 pandemic which I have at times found quite concerning. My apologies about the length of the statement but it makes some excellent points that we should all consider during this worrying time.

The statement urges Government to reject the formulation and implementation of any policy based on the simple application of chronological age. The BSG call on government and media organisations to be cautious in their use of language so that we continue to foster generational and societal cohesion during the course of the pandemic. Only by bringing the generations together in this time of crisis can we ensure that the least damage is done to people living in the UK and other countries. The statement goes on as follows:

“We affirm the prime goal to control and limit as far as possible the spread of COVID-19. To achieve this goal requires a clear focus on evidence-based practice, using high quality research. We fully support action taken to limit physical interactions, maintain hygiene standards and restrict non-essential travel, and we understand that actions to contain and delay infection will require disruption to our everyday lives.
We urge the Government to ensure rapid COVID-19 testing for our front-line health and social care workforce and the wide range of individuals and organisations who are leading the response to the pandemic. We are also in favour of providing tests for the wider population. This allows people to respond appropriately to the pandemic, ensuring that the right people isolate themselves at the right time. Wider testing is also essential to provide access to robust data that can be used for research and modelling to assist us now in responding to and containing the virus, and in preparing better for future pandemics.
However, for the reasons set out below, we object to any policy which differentiates the population by application of an arbitrary chronological age in restricting people’s rights and freedoms. While people at all ages can be vulnerable to COVID-19, and all can spread the disease, not all people over the age of 70 are vulnerable, nor all those under 70 resilient. Older adults are actively involved in multiple roles, including in paid and unpaid work, civic and voluntary activity in local communities, and providing vital care for parents, partners, adult children and grandchildren. Quarantining the more than 8.5 million people over 70 years of age will deprive society of many people who are productive and active and who can be a key part of the solution by supporting the economy, families and communities. If blanket measures are taken to quarantine older people when others in the population are not quarantined, this places additional burdens on families, communities and businesses, and causes harm to those individuals.

  1. As a population group, it is wrong and overly simplistic to regard people who are aged 70 and above as being vulnerable, a burden, or presenting risks to other people. Many people in this age group are fit, well, and playing an active role in society. Older people participate in paid work, run businesses, volunteer, are active in civil society and the cultural life of communities, and take care of family members including parents, spouses/partners, adult children (especially those living with disabilities), and grandchildren. There are currently more than 360,000 people over 70 in paid work, including one in seven men between 70 and 75 and one in sixteen women. Almost one million people over the age of 70 provide unpaid care, including one in seven women in their 70s. One in five people aged between 70 and 85, over 1.5 million people, volunteer in their communities. People in good health are especially likely to volunteer at older ages with almost a third of those in their early 70s doing so. Older adults should not be excluded but should be seen as a vital and necessary part of economic and community life.
  2. Serious health risks particularly identified for coronavirus are prevalent across the population. Not only do high risks exist across age groups, but also many people in older age groups have no underlying health conditions. Almost half of people in their early 60s have one of a range of health conditions (hypertension, heart disease, diabetes, lung disease, asthma or cancer). Almost one in five people in their 60s have two or more of these conditions. More than 30% of people in their 70s have none.
  3. It may be correct that age itself on average is presenting a risk for coronavirus even without other health conditions. However, this will not be the case for all individuals, amongst whom biological age and immune responses vary greatly. More importantly, this will on average be a gradually increasing risk with any specific age being an arbitrary point on this line. Choosing an arbitrary age, such as 70, presents the age risk as binary. This poses dangers for people below as well as above the age threshold. People below the age threshold will not be charged with the same level of responsibility for preventing the spread of COVID-19 and may falsely believe that they are not at high risk of serious illness or death. Government messaging that people aged 70 and over are vulnerable due to their age runs the risk that other groups may not take seriously messages about the need to maintain physical distance from others and to self-isolate. Messaging about how to avoid catching and spreading coronavirus should apply to everyone irrespective of age.
  4. If people are to be motivated to change their behaviour, they need to accept that they are personally at risk (perhaps due to an underlying health condition or family circumstances). Sweeping age-related discrimination is unlikely to achieve the desired behaviour change. People who feel fit, strong and healthy will feel that the message does not apply to them and will characterise themselves as belonging to a group apart. The age-based messaging also risks pitting young against old. It may make older people feel resistant to what they are being told, which they do not see as applying to their situation. Media, government and public health professionals should strive to use language that resonates, rather than obfuscates, how people identify in their everyday lives.
  5. People of all ages, when staying at home or trying to distance themselves physically from others, remain members of families, friendship networks and communities. All measures should be implemented with an awareness of people’s need for social support and solidarity. It is clear that physical distancing needs to happen across the whole population at once, and sensible rules for maintaining mental and physical health during this period need to be employed. We cannot implement a policy that will severely weaken the physical and mental health of some age groups through isolation while others are more protected. Given the centrality of both mental and physical well-being, there is a need for clear guidance on what people can do to maintain and improve their physical and mental health while keeping physically apart from others. This will only be effective if the message from Government is not divisive around age.
  6. Research points to the fundamental importance of social connections for personal well-being and physical and mental health. The COVID-19 crisis has prompted considerable discussion of loneliness and social isolation amongst older people suggesting, quite wrongly, that these are vulnerable states that apply to older people alone. Increasingly, media discourse is also promoting the view that all older people are lonely and socially isolated. Contrary to this discourse, the evidence shows that loneliness and social isolation affect people of all ages. Recent studies suggest that young adults may be at greater risk of loneliness than older adults, with one in ten people aged 16-24 years being often lonely, compared to three per cent of people aged 65 and over. We also know that people can be lonely or socially isolated even when living with others. Loneliness and social isolation are already intractable social issues that warrant thought and action about connectedness and support across all age groups and communities. Evidence shows that being seen to be part of community life can act as a buffer against feelings of isolation, give people a sense of meaning in life, and protect against depression. Voluntary and community organisations, charities and statutory organisations should receive financial and structural support during this time to continue their longstanding work on tackling isolation and loneliness regardless of age. They should also be supported and encouraged to develop new strategies to improve the number and quality of people’s social connections during the current time. This should include using both old and new communication technologies, ranging from radio and TV to the internet and digital devices, to facilitate social connections between people of all ages. We should be thinking of this period as an opportunity to bring people and generations together, especially by helping to bridge digital divides across society where these exist.
  7. Living alone is a separate issue that has not been adequately considered or addressed. While this is an issue that disproportionately affects people aged 75 and over, especially older women, it affects all age groups and generations. About a third of men aged 80 and over are single, divorced or widowed, but this is the case for 70 per cent of women in this age group (see Table 4). There is an implicit assumption in much discussion about COVID-19 that people will have co-resident family members to look after them, to recognise that they are ill, to keep them hydrated, to help them if they are unable to get back to bed after going to the toilet, to try to encourage some nutrition or to call an ambulance. Co-resident family members can also advocate for hospitalisation or hospital care if needed. If people live alone and no-one is permitted to see them, who will do this? With a simple message to older people who live alone that they must cut themselves off from others, we are also conveying the message that we expect them to become ill without care and even die. Some countries have constructed and converted isolation centres to enable people with coronavirus to move to a place where they can be cared for appropriately, thus isolating them from families and friends but also offering access to care. There is an urgent need for clear policies aimed at supporting people who live alone of all ages. Equally, we need policies that can provide testing, intermediate care facilities (potentially requisitioning hotels, student accommodation, or office buildings), and tangible support for people who live alone.
  8. As well as health and social care workers, family and friends who will need to provide care to people who become unwell from the front line of society’s response to the pandemic and will need to be acknowledged and treated as such. For many people with families who they love and with whom they live or who live within close proximity, it is anathema to leave them to be severely ill, self-care in that state, and potentially die alone. Overwhelmingly, family members will provide hands-on care for one another. They will ignore entreaties to physically distance as they tend to their children, their spouses/partners and their parents and grandparents, knowingly taking risks as they do so. Families will do this for the loved ones they live with, and those they do not live with. To expect otherwise is to ignore the interconnectedness of families and the behaviour of people. Here, rather than tell families to ignore each other, we need to offer rapid testing, advice and supplies (masks where useful for intimate care, eye protection, gowns, gloves, sanitisers, soap). We should also beproviding financial support for people faced with additional costs associated with managing daily life when family members have coronavirus, such as keeping the washing machine running and purchasing cleaning and hygiene products. We need to ask people to isolate as connected clusters rather than keeping loved ones apart. We need to work with human behaviour and not against it.
  9. Special thought should be given to how people might connect with loved ones who live in care settings. Denying people the chance to see their friends and relatives where the physical and mental wellbeing of both depends on that contact, and where other forms of contact may well not be facilitated, is a most drastic curtailment of human rights and needs. Testing becomes crucial, to know who has had the virus, who may be immune, and who may be able to visit in a safe way without danger. Policy and practice should seek innovative ways for people to visit their loved ones virtually, or across physical or spatial barriers. We need to have a much more nuanced and evolving discussion of this particular challenge.
  10. Some common sense is also needed about so-called “self-isolation”. Socially isolating in a large house with a garden, good internet connection and a steady income is a completely different experience to socially isolating in a tiny flat, with no internet and under financial stress. Online food and other deliveries, which feature as a key policy response to coronavirus, are not an option for a large number of people, do not apply at all in many rural areas, and are already difficult to obtain as companies struggle to meet surging demand. We need to find a way to allow people to walk or cycle to local shops, to take exercise (for themselves and their pets), and to wave at one another and make social connections while maintaining a safe distance and observing hygiene requirements, without being singled out or intimidated. We need to think about sustainable policies, perhaps staggering who can go out for what purpose and when, how many people can be at particular places at a particular point in time, and national and reliable delivery of hand sanitisers to food shops and pharmacies on entry and exit. Maintaining physical and, especially, mental health whilst keeping people safe and well is a priority. Exercise, personal mobility and human contact are key to healthy ageing and need to be promoted long beyond the current pandemic.
  11. A key message from research on social aspects of ageing is that policy and practice should be attuned to the diversity of older people in countries like the UK. The older population is far from homogenous and differs substantially according to such characteristics as age, gender, ethnicity/race, sexual orientation, disability, socioeconomic status, marital status, household composition, place of residence and care roles. Given the diversity of older people, and the considerable social and spatial inequalities that characterise later life, broad-brush policy approaches based solely on chronological age are likely to disproportionately disadvantage some groups. They may also ignore the specific needs of marginalised groups of older people, including those who have particular health conditions, live in long-term care settings, are homeless, or are imprisoned. Research on ageing has made considerable progress in recent years in drawing attention to the heterogeneity of older people. It would be a highly retrograde step if this progress was undone by policy measures that reinforce the view that all people over a certain age share a particular set of characteristics.
  12. As well as preparing policies for living through this pandemic, we need to think about death, and the potential for death rates not witnessed for generations in the UK. We need sensible, realistic and emotionally supportive frameworks for attending funerals, and for coping with individual and collective grief. Such frameworks are needed regardless of the age of people coming to terms with loss.

In this unprecedented period, we call for urgent and ongoing data collection and rigorous analysis of social and economic inequalities, and of the impact of inequalities through this crisis on the living conditions of people, their mental and physical health, and mortality. We call for urgent policy action to redress these inequalities. COVID-19 is bringing into stark vision the impact of many years of politically motivated austerity policies that have substantially eroded health and social care services and community and voluntary sector support. The crisis demands an urgent reversal of these policies and calls for future investment in social as well as health care. In particular, we call for the social and domiciliary care workforce to be fairly treated. We call for them to be protected as front-line workers against this epidemic. We call for their high levels of skill to be recognised not only in the form of words, but also in terms of their pay, job security and working conditions.
If physical distancing policies are to succeed, they need to take account of who people are, how they perceive themselves, how they behave, and their emotional needs. Such policies will be difficult to police, and enforceable sanctions are hard to imagine. We need to carry the hearts and minds of the nation with us in the months ahead if we are to ensure the least physical interaction and least spread of the disease. The COVID-19 response emphasises more strongly than ever before the need for co-ordinated ageing policy that cuts across government departments.We note that policies identifying an arbitrary chronological age for restrictions of human liberties are out of line with approaches in other jurisdictions, including Scotland and Ireland. People of all ages are privileged with the same rights and policies need to be applied at population level.

Ageism – the stereotyping, prejudice, and discrimination against people on the basis of their age – has detrimental consequences for societies and individuals. We reject firmly the ageist and stereotypical assumptions that underly public and policy pronouncements that rely solely on the application of chronological age.

We close by declaring our strong support and admiration for clinicians making hard decisions, including, in due course, potentially about rationing life-saving resources. In anticipation of these, we stress that it is not possible for clinicians to make moral judgements about the value of human life based on age. Faced by the pressures of a pandemic, clinicians will in all likelihood know next to nothing about the lives of the people they are being asked to treat and cannot weigh one life against another. All clinical decisions for access to testing and treatment as they unfold should be made on clinical need; using age alone as a criterion for decision making is fundamentally wrong.”

#CelebratingDSILs What about Online Diagnostic Support

This is my first post to my own Blog in a while. During November, December and January my posts had been limited because I have been nursing my dad who had a terminal illness and died comfortably at home aged 93 in early February.

Explanation over and hopefully now the Blogging will resume on a more regular basis again.

This week I attended the NHS Education for Scotland’s event celebrating the success of the Dementia Specialist Improvement Leads (DSILs)   which myself and the team I work with in UWS played a part in educating.

This is one of the projects that DISL Maureen Crossar led that I had a particular interest in.

Caring for people with dementia in the community is one area which is currently expanding. Recently the Alzheimer Europe calculated that with an increasing, and increasingly ageing, UK population the overall numbers of people with dementia; estimated in 2018 to be 1,031,396 will by 2050 be 1,977,399. A rise from 1.56% of the overall population to 2 .67% in 2050. There is pressure therefore to get this right now ahead of this expansion.

There is no clear way to provide all the people and their carers who require support with what they will need, so new ways to provide effective care need to be considered. This is one of way. Tihs resource was the winner of the Scottish Digital Health and Care Award 2020; and is NHS Lanarkshire’s Online Post Diagnostic Support Website which you can access from HERE

Two things to be aware of before you go to the site. It might have been designed for people receiving post diagnostic support but the information and advice is far more extensive than this. It has been tailored to suit Lanarkshire, so some sections discuss services and processes available in Lanarkshire which may or may not be replicate elsewhere. The legislative framework used throughout but the infomration can be easily transferred to a wider UK context.

The advantage of using this resource is that the information that it provides is validated and conforms to NHS Scotland standards (the information sources and hwere to get more information are all ij the links given within the site). There is 24/7 access to information which you can return to easily. People living with dementia and their carers can all access it when desired. It can be used to enhance staff knowledge of dementia, post diagnostic support and the services which might be available to improve people’s support and experience.

Topics the resource covers include understanding the illness, Power of Attorney, Driving, Anticipatory Care Planning, support for carers and lots more. Please explore this resource and use as you see fit. Note that the easiest way to find the site is to type “Dementia NHS Lanarkshire” into Google.

Helping To Prevent Winter Deaths

Every year that I have been running this Blog round about this time of year I make a post about the alarming rate of UK excess winter deaths. For example this is my post on this topic from last year  https://raymondsolderpeopleblog.wordpress.com/2018/12/16/the-ongoing-tragedy-of-the-uks-excess-winter-deaths/

However this year something different and something positive.

This month NICE and SCIE have worked together to produce A quick guide for home care managers aimed at helping to prevent winter deaths and illnesses associated with cold homes.

You can access the new resource HERE!

As they note, vulnerable people, living in a cold homes are at an increased risk of serious illness or death at this time of year. There new guide explains how some simple preventative actions can help to save people’s lives. They emphasise that care home managers and staff can play an important role in preventing harm caused by a lack of heating.

I think this guide is useful for everyone, not just for Social Care staff so I would urge everyone looking after an older person to take a look and perhaps download and print the pdf version of this guide available from the resources webpage.

Let’s try and get these tragic statistics down.

 

Dementia Stigma is an International Concern

Its the end of September so as always at the end of World Alzheimers Month,  Alzheimer’s Disease International publish a new World Alzheimer’s Report.

The report reveals the results of the largest attitudes to dementia survey ever undertaken, with almost 70,000 people across 155 countries and territories completing the survey. It spans four demographic groups: people living with dementia, carers, healthcare practitioners and the general public. Analysis was carried out by the London School of Economics and Political Science (LSE).

Some of the key findings of the report include:

  • Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia
  • 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member
  • Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.

For me the two findings that cause the most concerns were that almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.

Perhaps worse 40% of the general public think doctors and nurses ignore people with dementia and and 33% of people thought that if they had dementia, they would not be listened to by health professionals.

Now those figures are bad, but unbelievably over 50% of healthcare practitioners agreed that their own colleagues ignore people living with dementia.

The report reveals that stigma around dementia still prevents people around the world from seeking the information, advice, support and medical help that could dramatically improve their length and quality of life for what is globally one of the fastest growing causes of death.

“Stigma is the single biggest barrier limiting people around the world from dramatically improving how they live with dementia,” says ADI’s Chief Executive Paola Barbarino.

“The consequences of stigma are therefore incredibly important to understand. At the individual level, stigma can undermine life goals and reduce participation in meaningful life activities as well as lower levels of well-being and quality of life. At the societal level, structural stigma and discrimination can influence levels of funding allocated to care and support.

“…currently, there is very little information about how stigma manifests in relation to people with dementia and how this may vary around the world. This detailed survey and report now give us a baseline of information for dementia-related stigma at a global, regional and national level. We’re hopeful these findings can kick start positive reform and change globally.”

If you want to read more about the report and download a copy go to https://www.alz.co.uk/research/world-report-2019

Challenges in Providing End of Life Dementia Care and More About Pets!

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Image by Sven Lachmann from Pixabay

A paper published last year was brought to my attention by our friend the Mental Elf, part of the National Elf Service an Oxford University spin-out company founded by information scientists Douglas Badenoch and André Tomlin, who have been building evidence-based healthcare websites since the early 1990s. Douglas and André share a vision for making evidence-based research more accessible and usable for busy health and social care professionals

In a recent Blog published on the 26th of June their team looked at the findings of the following paper

Fetherston, A. A., Rowley, G., & Allan, C. L. (2018). Challenges in end-of-life dementia care. Evidence-based mental health21(3), 107-111.

which you can access by clicking here.

What the paper found was that people with dementia and their families should be supported to discuss end of life care preferences whilst the people with dementia still have the ability to do so. However, research is needed to address when these discussions should best take place and who should initiate these conversations.  They have highlighted that current policy and practice has focused on living well with dementia, but this cannot be at the expense of failing to support people dying well with dementia. Both the Blog and the paper are worth a closer look.

Continuing on the theme of Dementia Care something completely different. Following a very successful event held at the University of the West of Scotland where I work on the use of animal assisted therapies in dementia care my colleagues published their own blog about the event on the British Society of Gerontology’s Blog which is called Ageing Issues. You can read their Blog “Dementia & Multi-Species Caring: Current Practice & Future Possibilities” at

https://ageingissues.wordpress.com/2019/06/27/dementia-multi-species-caring-current-practice-future-possibilities/