Natural Remedies for Canker Sores

It’s an understatement to say that canker sores suck. Canker sores, small shallow ulcers (called “aphthous ulcers”) inside the mouth. These yellow-whiteish ulcers can hurt like hell, making everyday tasks like eating or talking painful. And about 20% of people regularly get canker sores.

Understanding Canker Sores

According to the Journal of the American Dental Association, canker sores are not bacterial, or viral. And while canker sores may be exasperated by things like toothpaste, smoking or acidic foods, the root cause of the sores is your immune system. And while according to DentistryIQ,

“Canker sores can happen to anyone, at any age. Although simple canker sores are mostly common in the age group of 10 to 20, complex canker sores can happen at any age.”

For myself and many other people canker sores became significantly more frequent and more annoying with age. This in part just bad luck, but more likely age related declines in hormones or nutrient absorption, and decreases in immune function.

Supplement!

There are a few remedies that are worth trying to help stop canker sores, and I don’t mean numbing agents that just ease symptoms. I mean actually treat the sores. Because the main causes of canker sores are related to immune function… even when the sores are caused by factors like tissue damage, that is the result of the human bodies inability to heal itself. That means supplementing can be a treatment.

B12, Folic Acid, Zinc, L-Lysine And Iron

Vitamins B-12, vitamin B-9 (Folic Acid) zink,  L-Lysine, and iron deficiencies can, and often do cause canker sores. Some doctors even suggest rubbing a B vitamin complex directly on the canker sores to help speed up recovery. While supplements are not a substitute for a nutrient rich diet, supplements can speed up the recovery from and even prevent canker sores. An all in one canker sore treatment may be the best solution if you’re going to go the supplement root.

Adaptive Androgen’s

Hormones play a large part in nutrient absorption, and immune function. Or to quote one study,

Whenever serum estrogen concentrations are normal in rheumatoid arthritis (RA) patients, lower androgen concentrations (i.e., testosterone, androstenedione, and dehydroepiandrosterone sulfate [DHEAS]) are detected in the serum as well as in the synovial fluid of male and female RA patients. The presence in the RA synovial fluid of a significant altered sex hormone balance resulting in lower immunosuppressive androgens and higher immuno-enhancing estrogens

That means androgen receptors influences the body’s defense system, and treatments like HRT or even eating adaptive androgenic foods may help prevent canker sores, in conjunction with nutrient supplementation or IV nutrition therapy.

Supplements like Pine Pollen or Ashwagandha Root Extract are considered adaptogenic, and can help fill hormone gaps, thus allowing for better nutrient uptake, and a healthier overall immune system. Many other adaptogenic compounds exist including ginseng, Astragalus, holy basil, cordyceps. Supplementing DIM can even help improve the hormone balancing effects of these herbs.

Header “Canker Sore Treatment” by PracticalCures is licensed under CC BY 2.0

HTR May Help Post-menopausal Women Reduce Risk of Covid19

A growing body of evidence shows that hormone replacement therapy effectively helps women find better health as they age. The North American Menopause Society, the American Society for Reproductive Medicine, and The Endocrine Society, “take the position that most healthy, recently menopausal women can use hormone therapy for relief of their symptoms.” While some risk still exists for any medical treatment, HRT is considered very safe.

No matter how low the risk may generally be, we are at a unique time in humanity. Covid19 has changed the way one lives. We aren’t just worried about staying healthy while flying; we worry about staying healthy while buying groceries. So, while medical advancement can make our lives better, elective medical procedures now offer an entirely new risk vector. 

Is now a good time for women to start hormone replacement therapy? Well, a preprint study led by King’s College London suggests that post-menopausal women have a higher predictive rate of COVID-19 than other studied women. 

The above findings are in line with previous research that analyzed sex-stratified Covid19 data found males and post-menopausal women were at a higher risk of death and severe infection. Still, the biological underpinnings of this were less clear at the time.

Researchers now hypothesize that the greater risk for post-menopausal women and men is lower estrogen levels. Estrogen interacts with the immune system in various ways, influencing the number of immune cells produced by the body. Further studies of SARS-CoV & MERS suggest lower estriol & estradiol levels may explain why men are at a higher risk of acute infection at any age than women.

Additionally, menopause leads to a higher risk of co-morbidities for Covid19, such as heart disease and type 2 diabetes. The increased risks for these conditions are due in part to the loss of estrogen’s protective effects. 

The King’s College London study found that hormone replacement therapy in post-menopausal women ages 50-65 is associated with a lower hospitalization rate from Covid19 but a slightly increased risk of contracting Covid19. The researchers advise HRT data be considered with caution due to the lack of information about HRT type, administration frequency, and treatment duration. 

Even with some missing information regarding treatment protocols, the HRT for data post-menopausal women shows the possibility of benefits that outweighs the risks. Besides the health advantages of a standard HRT protocol, the probability of reducing the severity of Covid19 can make hormone replacement therapy alluring. 

Logically speaking, some forms of HRT should present a lower risk of contracting Covid19 than others. For example, Using hormone pellets instead of oral, injectable, or transdermal options will reduce both hormone spikes and visits to your provider. With fewer doctors, visits should follow a decrease in the possibility of contracting Covid19. 

The decision for women to use HRT is ultimately between themselves and their doctors. Individual risk factors are varied, both regarding hormone therapy and the risk of contracting any disease. And many other options exist to help keep your immune system healthy to lower your risk for Covid19.

For more information about self improvement checkout Self Help from SelfGrowth.com

“Dengue virus infection” by Sanofi Pasteur is licensed under CC BY-NC-ND 2.0 CopyGO TO IMAGE’S WEBSITE

Look Forever Young With Botox

In the past, we’ve talked about feeling younger with HRT, but now let’s talk about looking more youthful. Botox has gotten so popular that it is now a tent pole of cosmetics. 

Who doesn’t want to reduce the fine lines, wrinkles, and miscellaneous markers of aging? Botox is less expensive (with lower rates of complication) than other procedures such as face lifts. 

It’s not a great shock that men, women, boys, and girls, okay, not boys and girls research Botox to look younger longer.

The popularity stretches well past the de-aging. Being FDA approved means the efficacy and safety are well known. And a wide range of health issues, for example, migraines can be treated with Botulinum Toxin. As a cosmetic treatment, Botox is head and shoulders above most other outpatient nip and tuck like face lifts.

Why Botox?

It is NOT a surgical solution

Dermal fillers or minor surgery are able to reduce the wrinkles and maybe the right choice for some folks. But Botox is considered a less invasive and less painful solution that also still grants terrific results.

Botox is also fast! according to one Botox provider in Southlake, injections can be completed in only a couple of minutes. And the benefits will be visible within a day for most people, especially those looking to reduce wrinkles around the mouth, eyes, and forehead. 

Many spas and even some salons can now offer Botox treatment. However, it’s recommended that you find a skilled medical provider who offers other treatments the first time you get Botox. Why? Well, maybe something like Dermal Fillers, KYBELLA Treatment, Laser Therapy, or a PRP Facelift would be better for you. 

Also, while the risk is a very, very low medical procedure, this isn’t a haircut. Make sure you talk to someone who knows what they are doing, and not just someone who wants to sell something.

“6455 Botox” by ec-jpr is licensed under CC BY-NC-ND 2.0 CopyGO TO IMAGE’S WEBSITE

Aging Like You Are 20

The fitness icon Jack LaLanne who held the world press up record, and marked his 70th birthday, by towing a flotilla of 70 rowboats for a mile-long swim is the definition of healthy aging. LaLanne worked out like a monster, never eating dessert, most of us lack not only the will power but the genetics to age like LaLanne. And thankfully we can live longer better lives now without having to be so blessed genetically and willing to suffer.

If you look at YouTube you’ll see chemists, and body builders discussing how celebrates back on pounds of lean mass, and stay forever young. The good news for most of us is that we don’t need to dive into exotic, or unsafe compounds. For a good many of Hollywood stars use bioidentical hormone replacement is helping them stay young.

For example The Rock, is probably not taking steroids and is instead using hormone pellet therapy.

Now sure most of us, will not work as hard as the rock, but most of us are just looking to maintain our health as we age. And avoid sacrificing too much of the things that make life fun. I want to live long enough to eat ice cream with my great-grandchildren not become Mr. Olympia.

Taking hormone replacement isn’t a magic bullet, but it can sure help you age more gracefully. And society is learning to accept that HRT can help us age better, and even live longer. Meet Joan Macdonald, a 72 year old woman, who with a little hard work, and according to IFBB Pro Greg Doucette some hormone replacement turned her health around.

We’ve known that HRT can help us live longer, and better for years. In 1997 a 12 year study was published suggesting that “millions of women could be missing out on up to three and a half years of life by failing to take advantage of hormone replacement therapy (HRT). This has been echoed by studies in 2019.

Book review: “People with dementia speak out” by Lucy Whitman

Published by Jessica Kingsley publishers, 2015.

ISBN-10: 1849052700
ISBN-13: 978-1849052702

 

It’s a necessity of civilised citizenship that voices are listened to. A particular issue with the narrative on dementia is that it has sometimes been unclear whose story we are listening to. It’s easy to ignore some stories if they don’t fit a big picture. It’s particularly easy to ignore those stories if you don’t actively seek them out.

Somewhat paradoxically I am also reading Koch on consciousness. This thesis is somewhat a reaction against the simply reductionist approach. It is inevitable that, in seeking out disease modifying drugs for dementia or possibly cures, the approach is somewhat blunt – but who’s to say it will not be effective?

I had to read Lucy Whitman’s book several times to understand it properly. Like a psychological thriller, somewhat, most of the power in the message is left entirely up to the reader to work out for himself. It’s a relic of Tom Kitwood’s work that no two people with dementia are the same – and this is abundantly clear from reading the diverse accounts of people living with dementia in this book. And yet important themes emerge – about how the diagnosis is unnecessarily bungled, often, by the medical profession, and how individuals come to terms with the diagnosis.

What is also revealing is the extent to which people have friends and family to rely on at this demanding time. But what is especially exciting, often, is that how people beyond the diagnosis of dementia (to use Kate Swaffer’s phrase) find a meaning in their lives. If you believe it’s not how you fall, it’s how you get up, it’s particularly educational to see how people have got on with their lives in the face of relatively little in an offering from the medical profession.

The book is very effective. The accounts sound authentic, and in no way homogenised by Whitman. The accounts are diverse, candid and sobering. It is a very well written book, which is a pleasure to read. I think the windows on various people’s lives would be wonderful background reading too for any professional in training.

No one account of dementia is any more relevant than the other, but this is not to say that all should have prizes. Every single person in this book has faced unique challenges and concerns. Lucy Whitman herself in the introduction confronts whether how representative the ‘sample’ is. Quite correctly, no one person is particularly representative, but I think it would be completely unfair, say, to say that there is no account from a particular diversity perspective.

But is this book entirely self-selecting? My issue with this criticism is that everything can be viewed through the self-selecting prism. What is it that makes someone write a book in the first place? Producing this book must have been a real ‘labour of love’ for Lucy Whitman, and her passion and enthusiasm seep through every pore of this book. One may in passing wonder the people with dementia are on the young side, some perhaps ‘professional activists’. But this would be entirely to miss the point – for example, as said before, is a vicar a ‘religious activist’ or an author ‘a literary activist’? One can certainly not ‘blame’ a person with dementia having a clear articulation of where he or she stands with the diagnosis. Whilst a person is not defined by any disease, its significance for the person, friends and family can never be underestimated.

There is currently no book like this. I suspect it will be incredibly hard to match it – and I feel somewhat this book taking the lived experience seriously is desperately needed given the relative abundance of books looking at dementia through other prisms, including strongly theoretical approaches, or books which are only accessible to a neuroscientific audience. Living realistically, and in a content way, with dementia is the big issue. What is particularly useful from this book is an overview of the sorts of services which are in existence following diagnosis (and which aren’t). I think this book fills that void after diagnosis where people often don’t know to whom to turn with the new news.

But the book, whilst fascinating and optimistic, also does depict a realistic view of the dire way in which ‘post diagnostic’ life is all too often organised from care and support services. But from this commissioners and other professionals can think constructively about what we’re missing, contemplate how we wouldn’t necessarily wish to start from here, and feel more than a morsel of regret about not looking towards people living with dementia in the first place.

So many congratulations to Lucy Whitman. This is a seminal and unique contribution, which deserves wide praise. It must be widely read, and I am certain it will be.

 

My day at the Alzheimer’s Research UK Supporters Group at the Wellcome Trust London

“Our vision is a world where people are free from the fear, harm and heartbreak of dementia.”

The history of the society is indeed formidable, described clearly from 1992.

I remember asking the late Prof Richard Doll, eminent physician, how he discovered the link between smoking and lung cancer. He answered with characteristic humility ‘serendipity’, and then quoted a definition of serendipity as ‘looking for a needle in a haystack and finding the farmer’s daughter’.

I think research does involve serendipity.

For example, it has only latterly been recognised that inflammation has quite a big rôle to play in neurodegeneration processes too; and my hunch is that this may one day form a way of approaching dementia pharmacologically.

How certain biological substances form and build up in the brain in dementia continues to be a curiosity. I remember being much inspired by the work of Prof Maria Spillantini at Cambridge, who was always incredibly modest about the advances being made in her laboratory.

I loved my day yesterday at the Wellcome Trust here on Euston Road in London.

Few people have really made an impact on me as when I saw Valerie Blumenthal talking about living with symptoms of a type of dementia called posterior cortical atrophy on BBC Breakfast. I am in fact hugely looking forward to Valerie’s book, which I anticipate will be brilliant.

Possibly it is in fact impossible to draft any strap line of a charity focused on dementia, but the mission statement of the Alzheimer’s Research UK is as good as one might reasonably wish for.

I happen to hold a personal position that research into dementia should be also be of benefit to those 47 million in the world who live with dementia daily. This not only might include treatment for symptoms, maybe memory, but also practical assistive help; or even therapy which might slow the disease process right down.

But it also does very much include active prevention of disease in people who already have developed dementia. I feel that the workstreams in non communicable disease led by WHO have had huge impact here.

Do I feel that there will be a pharmacological offering for dementia? For the whole of dementia, no, but for select different types of dementia, definitely maybe. I think we’ll be one day where cancer is, but this is only possible with parity of funding.

Do I feel it’s fair to blame charities on the woes of dementia policy elsewhere? No. It is up to voters and political parties to make the case for investment in social care, which clearly has been deficient until now. I don’t think it’s possible to make charities such as Alzheimer’s Research UK ultimately responsible for everything in dementia policy.

Do I feel I met some very nice people? Most definitely. I met members of public, ARUK staff and scientists who are extremely good people. Chris Roberts and Jayne Goodrick were there too – like family to me.

I think Hilary Evans leads the charity with remarkable clarity – to a degree that is really quite exceptional even in this crowded field – and had a very clear understanding of the raw societal challenges of dementia. My overall feeling, from doing a day of workshops which were thought provoking and enjoyable in equal measure, was that the charity is definitely in ‘listening mode’ and is in fact using its considerable responsibility to execute extremely good work. The charity is opposite to arrogant in its attitude, and had both a realistic and achievable view of what it hoped to achieve in the next few years.

 

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The learning objectives of the Masters in dementia I’m designing

This is a first draft only.

 

 

A. Subject Knowledge and Understanding

 

  1. An appreciation of the prime importance of the ‘lived experience’ in all research and service design.
  2. The social and economic context of dementia.
  3. An understanding of the relevance of ‘personhood’, ‘self’ and ‘identity’ in dementia.
  4. An understanding of different approaches to care, including person, family and relationships.
  5. The contribution of the cognitive neurosciences to understanding the symptomatology of dementia.
  6. The limitations of the medical model of dementia.
  7. The social model of disability and rights-based approaches.
  8. The nature of knowledge and research approaches.
  9. Application of inclusion and collaboration.
  10. The significance of language, stigma and citizenship.
  11. An acknowledgement of innovation and leadership.
  12. A recognition of the major legal and regulatory systems underpinning safe and high quality care.
  13. The organisation of healthcare systems to promote health and wellbeing whatever the care setting.
  14. Features of an environment which might promote wellbeing in dementia.
  15. The strategic drivers behind national and international research into dementia.

 

 

B. Analytical skills

 

  1. Critically review and evaluate evidence in terms of its source, reliability, validity and significance.
  2. Critically evaluate research methods appropriate to their purpose.
  3. Synthesise information and arguments in an original way.
  4. Ability to present information in an audience-appropriate way, e.g. scientific papers, posters, podcasts, talks, blogs.

 

 

 C.  Subject-specific skills

 

  1. Critically evaluate policies related to dementia, nationally and internationally.
  2. Apply in-depth knowledge and critically reflect on the impact of culture and diversity on people with dementia.
  3. Critically evaluate the influence of different approaches on perceptions of dementia (e.g. ethnographic, quantitative, case study, drug trials, art).

 

D. Generic and transferable skills

 

  1. Have developed and be able to apply critical evaluation skills in context.
  2. Demonstrate an understanding of ethical considerations in working with people with dementia including consent.
  3. Demonstrate an understanding of legal considerations, including human rights, equality legislation, and capacity.
  4. Identify and apply strategies to enhance partnership and collaboration.
  5. Effectively utilise Information Technology, and specifically online communication.

 

Subject areas for the PG Certificate, PG Diploma and Masters

Year 1 (Postgraduate certificate in dementia) 

Art and science of dementia (30)

Living beyond a diagnosis of dementia (30)

 

 

Year 2 (Postgraduate diploma in dementia)

Above +

Three out of the following:-

Law and regulation (20)

Leadership (20)

Innovation and improvement (20)

Care and support (20)

End of life (20)

Enhancing health and wellbeing (20)

Public health (20)

Communities and inclusion (20)

 

Year 3 (MSc in Dementia)

Above +

Research methods (20)

Practice-focused dissertation (40)

 

Beyond the rhetoric

The highest standards in English dementia policy will not be achieved by political smoke and mirrors, where the rhetoric requires a unachievable leap with reality.

In this current term of parliament, where the aim should not have been plugging holes in the roof (the NHS deficits) but the aim should have been a rollout of a care system fit for purpose, social care is on its knees. It hasn’t been ringfenced since 2010, and on top of that national debt has concomitantly gone through the roof. The state of the national finances are in a parlour state.

Whilst the intention of the Labour Party had been to roll out ‘whole person care’, there was never any operational meat on the aspiration bones. People were left guessing whether personal unified budgets would remain optional, and how pooled budgets could be achieved such that the universal healthcare system could be bolted onto a means-tested social care system.

Social care has had its well published challenges. The rhetoric of key parts of the law in operation, including the Mental Capacity Act and Deprivation of Liberty Safeguards, has not occasionally been matched with the reality. There have even been high level problems as to whether our law is now consistent with European law.

In “dementia friendly communities”, we have the absurd situation of very few paid staff or consultants, living with dementia or carers, on the personnel of major charities in dementia. Invariably, speakers at the conference are the same, presenting the same unbalanced biased script on the purported successes of research and drug trials when the actual picture is far bleaker.

The success of ‘Dementia Friends’ has absolutely nothing to do with the number of friends achieved. One ‘friend’ is a success if that means that that friend knows more about dementia than he did previously. But likewise amassing friends through a quick online application is not really ‘mission accomplished’ by any stretch of the imagination.

There are too many talks I attend where speakers boast of ‘Dementia Friends’ as pitched as training. Under no stretch of the imagination, likewise, is Dementia Friends training. It is certainly no where nearly adequate for the purposes of providing care, and it is a sad testament to the lack of ability of some commissioners that they are totally unaware of this.

Clinical commissioning groups are nothing other accounting machines, budgeting, assessing and identifying risk in spending for populations. They are statutory insurance bodies, in place for the eventual privatisation of the NHS. It is no accident they’ve been introduced by Andrew Lansley who felt he had learnt lessons from the privatisation of the utilities. The major heavy lifting of breaking up the NHS into manageable parts which could be later transferred to private insurance, or sold, is not accidental.

The term ‘person centred care’ has been misused around the world, although there are brilliant examples of such care. Life stories are used as an administrative checklist exercise, without engaging in the real ethos of seeing the person’s identity. Activities, marketed as ‘meaningful’, are administered like drug rounds. Person centred care is supposedly delivered by staff who have not been treated in a person-centred way themselves, often, with breaches of the national minimum wage and insecure zero hour contracts.

The surge in dementia diagnosis rates is not a ‘result’ if so much effort is put into recoding possible dementia into primary care rather than diagnosing ‘real dementia’. We still have no idea how much of this dementia is actually mild cognitive impairment in reality, and we have set some people up for a fall, by telling them they have dementia when they haven’t. This is abhorrent and inexcusable. There have been nothing other than smoke and mirrors when any of us ask legitimate questions about extra funding for GPs to enable them to feel confident in diagnosing young onset dementia, often not heralded by memory problems, below the age of 65. There’s about 30,000 of them out of 850,000 currently in the UK.

Of course, this was of course masterfully masterminded by Big Charity, government and the media, who are superb at the rhetoric and less capable on the reality. This annually repackaged garbage has got to stop in England.

Deeper and deeper

The English language doesn’t have a single word for ‘not being ignored but being putting at the heart of the discussion’. A useful word as any is involvement, and a dictionary defines involvement as: to engage, to connect, to participate and to influence. But there is a sense this is even an injustice to how people living beyond a diagnosis (Kate Swaffer’s term) feature: I ‘involve’ my postman when I receive post from him in the morning.

There’s only been one English dementia five-year strategy document thus far. The National Dementia Strategy (2009) entitled ‘Living well with dementia’ states that the person with dementia (and their carer) should be placed centre stage in terms of saying what was important in their lives and what a good life with dementia looks like. This feeling of ‘no decision about us without us’ has been pervaded all the (almost annual) national policies subsequently, and still it’s commonplace for people living with dementia to become a bolt-on at the end in conferences long after the original programme was designed. Wendy has described this recently.

I continue to have grave reservations about the label ‘dementia’, but understand how it exists to make the discussion manageable. I don’t think it’s possible really convincingly to live today without dementia, and with dementia tomorrow, only because you slip one point in a test which means you now fulfil medical criteria for dementia. Talk to anyone who has been richoted through the medical labels of ‘minimal cognitive impairment’ and ‘dementia’ how distressing this can be. Ken C offers one such perspective. There’s even a paper due for press in the US in the journal ‘Neurology’ explaining the heterogeneity in cognition may go far beyond ‘normal’, ‘minimal cognitive impairment’ and ‘dementia’. It’s here.

The Dementia Engagement and Empowerment Programme (DEEP) is a growing user movement across the UK. It connects involvement/influencing groups of people with dementia – groups where people with dementia are working together to raise awareness about dementia. An aim is to influence policy-makers and decision-makers, to influence local dementia practice and strategy, and to challenge the existing narrative about what it is like to live with dementia.

Big is not necessarily best of course. One ‘plus point’ of DEEP might be its sheer size, but this potentially produces two problems. Firstly, there’s a problem that the bigger the group the higher the chance of conflict within the group (but not necessarily so). Secondly, there might be a perception that being a member of ‘DEEP’ might be THE game changer; for example, some ‘activists’ would have been equally successful in the work in the absence of DEEP. But the “organise to action” aspect of DEEP is thoroughly commendable:

“You can start to think that you are the only ones doing it – DEEP helps you to see you are not alone.”
Member of a DEEP group

The report “Developing a national user movement with dementia – learning from the dementia engagement and empowerment group (DEEP)” was published earlier this year.

There’s an interview involving Tony Benn where he moots that the word ‘activist’ is used in the English as a term of abuse; for example a vicar is a ‘religious activist’, an author is a ‘literary activist’.

As for any group of people, there’s the danger of course that those who shout loudest call all the shots, get all the gigs, and so forth, and may not be ‘representative’. I myself have previously found myself tying myself in knots in thinking about how diverse the diversity is; for example, in a book recently, an author apologised for not having a narrative from a person who is L B G or T. But surely it would be a sad state if any group had to be completely representative? It is in any case numerically impossible for there to be robust representation of all 47 million people living with dementia.

The JRF report comments:

“There is a need for mechanisms that support people with dementia to carry on contributing as their needs change, and to ensure that a range of people with dementia, including those with more advanced dementia, can have their voices heard.”

it happens that many ‘activists’ living with dementia started their work in campaigning as people with young onset dementia (below the age of 65). And this is of course a phenomenon which DEEP has to grapple with: whether it is in fact articulating a new model army of ‘super people’ with dementia; in other words, are the people living in residential homes with very low MMSE scores conveniently airbrushed from the canvas?

The answer is of course for DEEP to seek out actively people living with dementia from other places. The label is convenient in terms of thinking about commissioning, but the irony is that many people with dementia and carers do not wish to view themselves through a ‘dementia only’ prism. To do so, in any case, would be to defy somewhat the odds (as comorbidity in dementia is very common). There’s a growing energy in the feeling that all services should be fit for all – inclusive for all, accessible to all, irrespective of age, irrespective of label.

So how does DEEP become a ‘sustainable’ outfit?

Here, “sustainability” could be defined as a same network of groups looking at different problems all the time, perhaps with one issue building on the next, or a constantly evolving group of people looking even at the same problems?

There is a very helpful paragraph in the DEEP report:

“Looking to the future: the business case for involvement groups needs to be developed. There is a mass of anecdotal evidence from within the DEEP network that staying connected, and having a role and a sense of purpose has long-term health and wellbeing outcomes for people with dementia. The British Psychological Society has listed involvement groups for people with dementia as an evidence based psychosocial intervention (http://bps.org.uk/networks-and-communities/member-microsite/dcp-faculty-psychology-older-people-fpop/news/launch-clinical-psychology-early-stage-d). Involvement groups are not costly and yet, for many, their status and long-term preservation is insecure.”

But nobody should realistically be asked to predict the future. This is equally so for DEEP as it is for academic research, where researchers often have no idea where the field will be in two years time even. A worthy question, however, is what makes DEEP particularly significant at this moment in time? The answer could lie in something as simple as the fact that a lot of attention has been given to dementia following the Prime Minister Dementia Challenge; and that the moral integrity of anything to do with dementia does mean having people with dementia at the heart of the agenda. This is of fundamental importance, say, if you’re trying to encourage people to enrol into basic research which ultimately might furnish the world with a cure for 2025? Besides, one is left a bit unclear whether the activism is for today, with social care funding being on its knees in England, or for some time in the future? People with dementia often report living very much in the present, and not putting off for tomorrow what can be done today. The danger with involvement is that it becomes a cinderella ‘tea and crumpets’ exercise rather than an immediate reaction to gross injustices in research and service provision, with the activists not wishing to offend anyone merely out of political etiquette.

And the inner workings of DEEP have been much rehearsed by other groups.

Take for example this paragraph,

“Organisations are beginning to access the DEEP network to find out the views of people with dementia. There is a danger that they ‘use’ the network to further their own goals, without reflecting on adapting their own processes, or thinking about engagement beyond consultation. DEEP guidance notes make recommendations about ways of engaging with groups of people with dementia. However, DEEP does not provide a monitoring role on local engagement, even though it works hard to ensure national influencing opportunities are well planned and executed.”

 

So what happens if a person with dementia wants to launch a worldwide campaign ‘Dementia Aid’ thus promoting the victimhood of people also beyond a diagnosis of dementia are actively campaigning against? That’s democracy – but not if the person is unilaterally doing on it ‘on behalf of others’ with no real mandate.

So is DEEP merely bailing out what should have been common-practice elsewhere in the NHS and other statutory services? Well if it is – and many people have evidently drawn therapeutic benefit of sharing their stories with others listening, irrespective of your own operational definition of outcome – it’s sure better than a single leaflet from a well known charity near you?