Restraining Dementia

You may have seen this article (or one in  a different newspaper) recently about how many people living with dementia in care homes are being illegally restrained. I try not to read articles too often as they upset me and I get rather cross about the lack of knowledge and understanding from the so called professionals.

The horror stories we hear really do hack me off, for many different reasons. Firstly for the scum bags who clearly went into the caring profession for the wrong reasons and become neglectful and abusive. Secondly for the lack of training given to so many carers, leaving them feeling less able to cope with the difficulties that something like dementia can bring. Thirdly for the wording used, constantly so much negativity is thrown out, it is impossible not to feel irate after reading such articles. Fourthly, because I know that there are some truly great care homes out there, with truly great carers who give a damn about each and every one the individuals they assist. And that is the point. They see the people they help as individuals, not as bed fillers, or nuisances, or illnesses, or trouble makers, or old people on their way out. Individuals, with a back story, one they may well be willing to share if you take the time to listen.

The reason people with dementia can get aggressive, or harmful to themselves or others is not because they find it amusing, or because they want to make people’s lives harder. But because they are struggling inside their mind. I keep seeing a picture on twitter, they are not being difficult, they are having a difficult time.

So many cases that this article referred to could be prevented by simply taking some time to be empathetic, finding out what is causing the difficult behaviours and trying to eliminate that. Just one afternoons training for all nursing and caring staff highlighting what dementia really is, could help them with what must be a difficult stressful job anyway. Being underequipped or misinformed won’t help anyone.

Trashing Families

I’m not sure how to change to font here, so I’m afraid this post is going to be in your face, until I figure out what mistake I made!

Last week I read an article in the Telegraph, the headline “Jeremy Hunt: Dementia ‘comprehensively trashes families'”. Unfortunately, the article had a great point to make about the necessity of a helpline for the carers of individuals with dementia. But this was completely covered up by the negative headline.

It irritates me that we all want dementia awareness, so that people can feel more at ease to get a diagnosis, or some help and support. And yet still people are reporting and highlighting the negatives of dementia. Yes, it is horrible. Yes it can become debilitating. I’m not denying that, but we need to put more focus on the positives, and the possibility of positives for families/carers/individuals, given the right support and information.

The start of which, I feel, and have thought would be great from very early on in my life of caring for nan, would be a helpline. Just knowing there is someone I could ring, at any hour of the day that can offer another perspective, and give me that boost. Or someone who can educate me on what is going on. Or just someone to talk to, being a carer, and indeed having dementia, can be very lonely experiences. And having someone who would be happy just to discuss the mundanities of life would make the world of difference.

So please, let’s ease up on the negative press. Everyone knows how hard things are, and let’s focus on some good news, that might make someone’s life that much better.

Science of Fear

“There’s a science to fear
It plagues my mind
And it keeps us right here
And the less we know
The more we sit still”

For those of you who (like me) missed This Morning on ITV on Friday 13th December it can be found here at about 45 minutes in. Arlene Phillips and Fiona Phillips, who have both experienced dementia within their families took some time to chat about the G8 dementia summit and their hopes for the future of dementia. Here is a quick rundown of the interview and my thoughts included.

I agree with Fiona, the G8 dementia summit sounded, and was impressive. But so much was omitted, or not talked about enough that it was a little disappointing. Getting people talking is amazing, but again, the money just being thrown at it is not enough. People are currently being told to get home and get on with it, and have to rely on social services, which are completely drained. My experience with social services has been fantastic, but I have heard far too many stories of Social Services not getting involved until frankly it is too late, not understanding the illness and the impact it has on families, or acting in a beneficial way to all. There is no national blue print and it is such a post code lottery on what kind of service you get but, also depends on how much you or loved ones fight for you. For those without a voice, I can imagine so many suffering in silence.

As Arlene said, in hospitals, individuals with dementia often are put on a main ward, which can be distressing for them, and for other patients who may not understand. Patients who have dementia need special and extra attention to keep them feeling safe and reassured, to prevent any negative behaviours.

My previous posts on the G8 may have seemed a little angry, sad or let down. And yes, I guess I won’t be happy with any result, it could always be better. But I agree with Arlene saying that at least the doors are now open, and as one of my twitter friends said, it is now down to us to keep the snowballing going. I am glad it has moved so quickly (in relative terms, the development of awareness and the summit etc has moved much quicker than those of cancer/aids) and only hope we can keep things going to a positive result.

The story of Arlene’s father is probably a common one (more common than it should be – where the family has been told that the care home does not cater for those with dementia or Alzheimer’s, and so the father had to move care homes, after he had already been settled in – I think this is disgusting, a home should be able to cater to all needs and is something we should be looking to resolve ASAP!)

More focus needed to be put on the support needed by carers, and the work carers do, especially the unpaid carers, who take it upon themselves to give up work/lives/ etc and undertake a job that takes up 24/h a day 7 days a week. For nothing.

I don’t think you would know if dementia was striking you, even if you had cared for or witnessed a loved one with it. And there was a disagreement about whether we would want to know or not. I don’t want people to be frightened to find out they have dementia. That’s half the issue at the moment, I want people to know about the support available and that we can assist them to live as much of a normal life as possible.

The fear is one of the greatest reasons people refuse to get diagnosed or even talk about dementia. Fear of what may happen to them once outsiders discover they are mentally ill – only within the last 100 years have we stopped taking away people’s rights and locking them away because they may or may not have had a mental illness. Fear of what will happen to their family as they may no longer be able to provide for them, or knowing they may well forget who their family are and worrying about the distress this would cause. Fear of what will happen to them internally – will they forget how to do things, will they need help washing and dressing, or even *shock horror* toileting. The fear of losing their identity, independence and the fear of demeaning themselves all contribute to an individual remaining silent about the struggles they may be facing. And all this is down to the way we have portrayed dementia and other mental illnesses in the media, and it is down to us not making enough of a fight for proper love and care for those who need us to support them in an independent life. If we educate ourselves and others we learn that with small alterations life can still be lived.

A diagnosis of dementia never has to mean everything you know and love is over.

G8 Dementia Summit – Communique

In this post I’ll cover what was written in the communique, which was a bit more detailed than the declaration. I’ll try not to repeat myself.

“We understand the importance of using existing evidence and knowledge to inform decision-making, as well as creating better and more robust monitoring and evaluation evidence” – As mentioned in the previous post, I do hope this means existing individuals with dementia and their carers. Who else could have better knowledge and experience?

“We acknowledge the need to attract new investors and the need to support the disruptive technology and innovation in companies and academia that is currently being postponed or shelved because of the technical and financial threat of failure”- as brought to my attention by another great friend on Twitter, The Dementia Advocacy Network will now be closed due to funding issues. This announced to me the same day as the G8 dementia summit promised to stop this kind of thing happening.

“We recognise that both public and industry-led research and capacity must be encouraged to enable new approaches to be identified and developed. We must explore all avenues of innovation. Priorities for investment include:
• Research to elucidate the mechanisms underlying the initiation and progression of neurodegeneration as a basis for identifying new targets for therapeutic development;
• Prevention of dementia;
• Making timely diagnosis and early intervention feasible, affordable and cost effective;
• Facilitating the integration of care and helping individuals and their carers access care and social services in their homes and communities; and
• Making care homes more responsive to needs.” Prevention would be great, finding a cure, finding the cause, all great. However we cannot be making timely diagnoses without removing the stigma and encouraging people to seek a diagnosis without fear of what may happen to them, or them thinking it is a normal part of aging. And we shouldn’t just be making care homes more responsive to needs, but all businesses. As for facilitating the integration of care…We don’t just need care and social services, we need more local support groups or respite available. We need someone to talk to any hour of any day. Dementia doesn’t work during office hours, which is the only time you can contact social services. I could go on and on about this. It winds me up that we have to get to breaking point before help is offered.

“To reduce the impact of dementia on an ageing society…” Dementia is not just affecting older people. There is little mention of younger onset dementia anywhere at all in the communique.

“We should explore ways to connect people affected by dementia, particularly to support collaborative problem solving” I do believe many of us are already exploring this avenue. If any research had been done by the summit you would have realised how many online support groups there are, chat rooms, tweet ups, currys, blogs which are uniting us and encouraging others to connect and suggest ideas.

“Dementia is a global challenge and one which is set to intensify. History shows major diseases can be made manageable, even preventable, with sufficient political will. We therefore need to better understand risk factors for dementia in younger generations, identify available options to reduce risk, and develop and implement rigorously designed public health programmes” (yes I just made a little “woop” sound)BUT WHAT ABOUT SUPPORT?!?!?!

“Responding effectively to dementia requires policy makers across government to work together. Governments can also learn from one another. To learn from one another and facilitate knowledge exchange, we will strive to improve the way in which we share government policy documents on treatment, services, interventions and research for people affected by dementia” – does anyone know if countries discuss their own research into illnesses etc with each other? If one country starts an experiment for example do they tell others? The way the summit talked about sharing ideas and discussions between countries leads me to believe this is not a regular occurrence, so why? Why aren’t countries discussing things that working and things that aren’t? This world baffles me, us plebeians have the sense to share, so why aren’t the governments?

“Dementia is our collective social responsibility. We affirm our commitment to improving the lives of people affected by dementia, regardless of nationality, identity, background, culture socioeconomic status, language or religion” –  it’s great that in this day and age we won’t discriminate against anyone while improving lives. It’s also great that we feel the need to state that we won’t discriminate.

“Dementia requires long term health and social care support. Providing care for those with dementia can present challenges for families and carers. We need to provide better and more concrete measures for improving services and support for people with

“We pledge to disseminate successful approaches to supporting people with dementia and their carers including:-
• Provision of advice, including on care planning, management and wellness support
• Appropriate use of medication, particularly antipsychotics, and delaying and/or reducing secondary complications
• Community-based programmes fostering inclusion and improved quality of life
• Delivering services through a continuum of care, including primary care
• Individual tailoring of care
• Realisation of new, ambulant living options
• Helping care homes to meet the needs of people with dementia
• Affordable options for care and everyday support
• Addressing end of life care”- Most of this is already going on, in the areas with more support, and for those with the money to pay for it. What we need to focus on is helping people realising there are other options and making it affordable.

“Carers themselves are often older adults, mainly women, who may be dealing with their own health problems. We call for greater social responsibility and innovation to improve the quality of life for carers and improve care while reducing costs and financial burden including:-
• Training for carers, including how to deal with dementia related behaviours
• Improve the reconciliation of care and career for carers
• Support carers in acute situations and crises
• Local and affordable options for care and everyday support
• Promote civic engagement and the development of social networks
• Attract and train community representatives to support people with dementia in social environments
• Creating better and robust evaluation evidence
• Using existing evidence and knowledge” Again, why is this a secondary point in a communique that won’t be read by the masses? It’s been mentioned that we need to make dementia research etc more accessible, but I’ve struggled to read and understand the declaration and communique. And I know what I was looking for. Why has this not been part of a more in depth media coverage? To make people aware of what we (family, carers and individuals with dementia) need.

“Appropriate autonomy and self-determination, including substitute or supported decision making, for people with dementia must be protected and strengthened. Therefore national and local policies should be in place to ensure appropriate autonomy and self-determination are recognised and protected.” Here’s looking at you red bank, and your lack of knowledge regarding power of attorney.

“As people age, many fear the potential onset of dementia-related symptoms or a diagnosis of dementia. Negative reactions from family, friends, and professionals can impact a person’s willingness to seek assistance, as well as their well-being and ability to manage the changes brought about by dementia. We commit to improving the understanding of community attitudes towards people with dementia across generations.” – Once again, already being done – Hi Purple Angels 😉

…we call upon organisations… “to promote various forms of civic engagement on dementia awareness, and to contribute to the prevention of dementia and to improve care and treatment where they can”. – I may have to include this in the Purple Angel contact letter I send – the government wants you to get involved guys!

If you want to check the information without my annotations and comments:

G8 Dementia Summit – Declaration

So I’m sure we are all aware of the g8 dementia summit held in the week. Here is my summary and thoughts of what was discussed and whether it will make the difference we hope for.

  • My first issue was with the Prime Minister saying he wanted the day of the summit to go down in history as the “day that the global fight back began”. Well excuse me Mr Prime Minister, I think you’ll find that many of us plebeians have been fighting back from the day this illness surfaced in our families. I myself have been fighting for nearly a year, which is nothing compared to many of the people I adore and follow. Little recognition for the fight backstage? No? OK then. We’ll carry on regardless.
  • My next problem was this quote “It doesn’t matter whether you’re in London or Los Angeles, in rural India or urban Japan – dementia steals lives, it wrecks families, it breaks hearts and that is why all of us here are so utterly determined to beat it,” I agree, dementia can do these things without the correct support for the individual, carer and families. Which is what the current problem is. There is little or no support for those in this situation. It’s not so much that I am saying David Cameron is wrong, it’s just he makes it seem, to me, that there is other option but this destruction. Yes we do need to beat it, but first shouldn’t we tackle the stress and upset caused by lack of funding for support etc?
  • Yes it’s lovely that they are doubling the funding to £132m (by 2025-that’s another 12 years away) but that is specifically money for a cure. Which again, I agree is needed. But personally I would like to see more money donated to helplines, support groups and personalized nurses/carers like Marie Curie/Macmillan etc. For example more localized Admiral Nurses to support families and individuals through what can be a very trying time, so they feel less alone and stressed until the cure is discovered. Also, the government pledged £375m to aid abroad. I’m all for charity, but we pledge this amount and then we end up giving more on top of that to foreign countries, where the money will also never end up with those who need it. Perhaps we should keep this money and use it to support the families and individuals with dementia?

Those are my three main bug bears. I will now go through the declaration from the G8 dementia summit and highlight the things that struck me.

“We acknowledge the on-going work occurring in our countries and globally to identify dementia as a major disease burden and to address issues related to ageing and mental health, including the World Health Organisation’s 2012 report, Dementia – A Public Health Priority” – as some of my online friends have also pointed out, the word “disease” comes with many negative stigmas. One pointed out that it is usually associated with contagiousness. We want to eradicate the belief that dementia, like other mental illnesses is catching. That’s why to us, dementia is more an “illness” than a “disease”. I looked up the difference between an illness and a disease and got the following response… “The difference between an illness and disease is that an illness is subjective feeling with no particular condition while a disease is a condition that leads to improper functioning of the body. An illness is curable but there some diseases that do not currently have a cure. In diagnosis the root cause of a disease can be identified e.g. pathogens, allergic reaction, but that of an illness is not identifiableAs we do not yet know what the cause of dementia is, how can we define it as a disease?

We recognise that dementia is not a normal part of ageing – I’m glad they made this point, so many people don’t go to get diagnosed for they believe they are going through a normal part of ageing, until this idea is tackled, many more undiagnosed cases will slip through the net and not receive the “help” they need. (I put help in inverted commas as it comes down to whether or not that support is available anyway).

“We note the socio-economic impact of dementia globally. Seventy per cent of the estimated annual world-wide cost of US$604 billion is spent on informal, social and direct medical care. Yet nearly 60 per cent of people with dementia live in low and middle income countries so the economic challenge will intensify as life expectancy increases across the globe.” – This sentence confuses me, I’m guessing us unpaid family carers are included in the “informal” part. (If we’re not, I’ll be slightly peeved at the lack of recognition). Even so, there is nothing there to mention how much unpaid carers SAVE the global economy, putting themselves out of pocket for no reward other than the emotional reward that caring gives.

“These costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. We recognise the need to strengthen efforts to stimulate and harness innovation and to catalyse investment at the global level.” – Not everything has to cost so much money, a great friend of mine on twitter designs things intended to aid those living with dementia, and has produced many cost effective versions of the pricier products available online. Using the innovation and experience of those who live with and/or care for an individual with dementia, I’m sure we can find better care methods/treatments and the such like at a more affordable level.

They support the appointment of a Dementia Innovation Envoy – as said above, I hope this includes people who have experience of dementia, in order to increase innovation to improve the quality of life for individuals with dementia and their families.

“The ambition to identify a cure or a disease-modifying therapy for dementia by 2025 and to increase collectively and significantly the amount of funding for dementia research to reach that goal. We will report biennially on expenditure on publicly funded national dementia research and related research infrastructure; and we will increase the number of people in dementia related research studies” – OK, so this is no bad thing. Increased funding and research is always going to be a beneficial thing, but, at fear of repeating myself. A cure is not the only thing we need.

” Encourage open access, where possible to all publicly funded dementia research and to make the research data and results available for further research as quickly as possible, while protecting the privacy of individuals and respecting the political and legal frameworks of the countries in which the research is conducted” As a blogger about things dementia related, this excites me. Anything we can learn about dementia, and share with others will all help.

“Consider what changes could be made to promote and accelerate discovery and research and its transformation into innovative and efficient care and services” – how about the first, and most important thing? Raise awareness to remove the stigma. Once people are made aware of dementia, and how it actually affects the individual and their carers/families they will be more likely to donate voluntarily or help in other ways such as volunteering. Schemes like the Purple Angel will be integral in this awareness raising. And I am proud to be a part of it.

“Call upon all sectors to treat people affected by dementia with dignity and respect, and to enhance their contribution to dementia prevention, care and treatment where they can; and call upon civil society to continue and to enhance global efforts to reduce stigma, exclusion and fear.” And there we have our first mention and acknowledgement of our backstage fight. It’s true though that this awareness needs to be made in all sectors (as highlighted in my red bank posts). Anyone who may come into contact with an individual with dementia in the workplace needs to be aware of what it is, how it affects the individual and what they can do to help.

All this will be going on until they meet again in 3 years to review. But will it make a difference? I’m not holding out much hope I’m afraid. I think all this summit has done was made the media focus on dementia for a day. And then poof, it’s gone again.The true impact will be felt once all our backstage fights come together, and are supported by the government, businesses and all other sectors.

I will stop here, but I will be doing another post about the communique, which goes into more details about the goals and aims of the summit.

Magical Mystery Tour

“FORGET THE WORD REMEMBER” … It is an impossible request”

This is kind of a follow up to my post about the Montessori method of care. I have recently been reading “You Say Goodbye and We Say Hello” by Tom and Karen Brenner. They embrace the Montessori method and this great book gives us information, anecdotes, activities and advice to help us find the best path of caring for a loved one. We are told in the book that the Montessori method is based on finding people’s remaining strengths and their spared abilities to learn at their own pace, in own time, with no pressure or judgement. The best way to help people with dementia is to incorporate procedural memory. This is based on muscle memory and is not as easily lost, so use activities incorporating these to improve abilities.

The title of my post may seem strange, which is what I thought when I saw the chapter of the same name. But it is very well explained. The magical part of dementia is when the part of our caree we thought we may have lost reappears. The mystery being that so little is known or understood about dementia, and as soon as we think we understand a situation and can handle it, it changes.

I have to admit that if I had read this book maybe even a year ago, I wouldn’t have truly understood it, it may even have made me cross (something they accept in the book). I could not/would not have believed that anything positive could come from dementia, as I was so completely tuned into the idea that dementia was “the long goodbye”. That everything would end, that nan was dying and that was it. But from being around nan, and reading the Brenner’s book, I have learned, and want to share with all that dementia does not need to be a long goodbye, so long as we learn new ways to say hello. Part of this process is of course saying goodbye to your pride, and sometimes privacy, but that doesn’t have to be a bad thing.  Karen and Tom tell us that this is OK, it is Ok to feel negative. But we have to remember that negativity doesn’t help anyone. Some great questions they ask us to ask ourselves include: “Do you find that you sometimes feel closer to the people you love? Do you find that you are learning to live in the moment? To appreciate things you once took for granted?”. The best way to avoid the negative feelings is to stay focused on the present, not the past or the journey ahead, just what is happening now. And that is how our caree with dementia is living. In the now, because that is all they have. The Brenner’s encourage us to live this way too. To pay attention, take everything in, see it instead of looking at/past it, hear it rather than listening absently. We learn through the book that dementia is not about death, it is about life.

Tom and Karen even manage to put a positive spin on that dreaded moment when our loved ones no longer recognise us. For us of course it can be truly heartbreaking and lonely, but we can make it a great opportunity to “drop the baggage”. It is like a new beginning. Which for me seems like a lovely way to think of it, and is definitely something I will be bearing in mind when that time comes.

Great ways of interacting with your caree can include (but are not limited to) anything you may have seen in my blog, music, reading and telling stories/jokes. Anything that encourages muscle use, speaking, or the ability for your caree to complete a task, and feel successful. As I have previously spoken about, stories are amazing, and a great quote from the book sums up my feelings: “Their stories remind us that dementia defines a set of symptoms, but it does not define a life”.

The overall message I took from this book was that WE ARE AMAZING. Not to think of ourselves as martyrs, or victims to our cause. More as heroes making the most of a gift. And remember, we are not alone. We all have each other, if only we ask for the help and support we need. (This was something else Tom and Karen spoke about, it is not shameful to ask for help, it does not make you weak, you are giving the person you’ve asked to help a gift to be compassionate, and useful. And isn’t that what we all want?

Check out: The Fisher Alzheimer’s Research Centre website and blog:

The alzheimers reading room:

Montessori, Dementia & ECAT

UPDATE 30/07/2013: Have been informed of additional information you may like to check out alongside this post – this book looks fantastic, will definitely be purchasing. – an image of Tom Kitwoods care model. The person (caree) should always be the central factor

Massive thanks to the contributors 🙂

I hope this post doesn’t make anyone feel like I’m being demeaning, but I have wanted to write it for a while, and I know others have covered it.

I used to work in nurseries with children, and despite them not specifically being Montessori nurseries, of course we used some of her techniques. And I have realised I use this experience with nan. And more recently ECAT (Every Child A Talker). I think it’s important to try and encourage and stimulate the use of verbal communication in the hopes of delaying the day when it is forgotten.

I understand some of you will know exactly what the Montessori techniques are, and the outlines of ECAT but for those who don’t I’ll outline the basics.

Montessori believed in Independence, Freedom and Respect, which I think is certainly something we are all trying to promote for our carees. And these can be achieved at home, through:

  • Choice of activity through options
  • Uninterrupted work time (I will explain how I interpret this in a sec)
  • Learn from doing NOT listening

Firstly it is important to promote choice with your caree, to re-instate the validity of their decisions. But remember to keep it simple and limit to maybe 2 choices so as to not overwhelm them.
Secondly, I take uninterrupted work time, to not necessarily mean learning or working, but anything your caree is doing. Help keep them focussed by only doing the thing they are doing. If you want to chat, turn the telly off etc.
Thirdly, don’t talk at them and tell them how to do things. Show them and do it with them. Generally speaking people learn better from practical activities rather than lectures. And a person with dementia won’t be hearing your lecture, they’ll most likely hear “bzzz bzzz mumble mumble blah blah”.

Montessori also believed in having an environment that reflected the needs of children. Or in our case our carees. (I dislike comparing my nan to a child, but the dementia behaviours are the ones I’m tackling here. The dementia is the child, so to speak). The environment should be:

  • Constructed in a way that is in proportion to their needs e.g. nan cannot get upstairs, so we constructed her a bedroom downstairs
  • Be clean and attractive. There is no point expecting your loved one to join you in the kitchen to help prepare dinner if it is a mess and there is clutter everywhere. Eliminate visual noise.
  • Make sure things are in order. Nan loves tea, so the tea cup next to the container with teabags next to the milk jug next to the kettle.
  • Have an environment that won’t hinder movement. Exercise of any form is vital to keep your loved one mobile and will help build muscle and stimulate the brain.
  • Once again, whatever activity you are doing, only have those materials out. It helps lower confusion.

ECAT can be simplified into these simple steps, and hopefully by following these you can stimulate your loved ones conversation skills and prolong verbal communication.

  • Talk TO them NOT at them. Give them a chance to respond, no matter how slow they take. Watch them for signs they have understood what you have said before you carry on waffling.
  • Spend time each day dedicated to just conversation. Turn the telly off, remove any distractions and chat for however long your loved one stays connected for. Nan can talk for hours some days and barely 5 minutes the next.
  • Repeat words or sounds your caree makes to confirm meaning.
  • Share a book/newspaper/magazine/poem/song every day and get them to join in, offer opinions so help stimulate the vocal chords, as well as the brain. Nan loves talking about the news, it’s our daily moaning time.

If you can think of any other educational techniques that could be used please do let me know. Thankyou once again to all who have read/shared/contributed to this blog.