Sleep and Dementia – the importance of getting those zzzz’s in!

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There has been a lot in the media about research on sleep and dementia. I recently heard a talk from Rachel McGuiness at my Athena network who is a sleep expert. Everyone was engaged with and thoroughly enjoyed her fascinating presentation because, honestly, who hasn’t had periods in their life when sleep was hard to come by? Please read this post from Rachel and contact her if you need further information/advice…

Sleep to keep your brain healthy

I’m not an expert on dementia but I am an expert on sleep, and we know that lack of sleep can lead to a great many health issues: researchers have recently established a strong link between lack of sleep and the likelihood of developing dementia.

We spend a third of our life asleep, so by the age of 75 you will have spent about 25 years asleep!

Why do we need to sleep?

Sleep is crucial for our survival, we can survive three times longer without food than we can without sleep.  It is essential for our physical, mental and emotional wellbeing as it maintains our brain, immune system, metabolism, blood pressure and hormones, it is also when the body gets to do its repairs to cells, tissues and muscles.

Our sleep is broken down into 90 minute cycles in which we go through four different stages of sleep – very light, light, deep and REM (Rapid Eye Movement) sleep.  During deep sleep is when brain and body maintenance takes place – this equates to only about 20% of our night’s sleep.  To ensure that this happens effectively, we need to have good quality uninterrupted sleep for between four and six cycles each night, which is around six to nine hours.

Deep sleep is the only time the brain can detox itself and get rid of the build-up of toxins it has accumulated during the day.   As you know the body has the lymphatic system to clear out toxins through sweat, but what is amazing is that the brain has its own dedicated cleaning system called the glymphatic system.  Our brain cells shrink by up to 60% to allow space to make it easier for cerebral spinal fluid to shampoo and rinse away the build-up of a sticky toxic protein called beta-amyloid; it’s the brain’s equivalent of a daily refuse collection.

We’ve all experienced a bad night’s sleep where we’ve woken up with a foggy head, can’t focus or concentrate and feel irritable during the day, this is because our brain hasn’t been able to detox.  But when we catch up with our sleep, we feel so much better and get back to normal.  Continual sleep disruption or bad quality sleep will increase the risk of dementia, as the build-up of the sticky protein will turn to plaque and start to kill neurons in the brain.

As a modern society, we are sleeping less than we should with over 70% of adults having some form of sleep problems. When we don’t get sufficient sleep, or we disturb our sleep patterns, we don’t give our brains enough time to complete its proper cleaning system.

There is, however, a difference between these occasional times where we don’t sleep well and continual poor quality sleep. When this happens, the body’s glymphatic system really struggles to do its job, the brain’s clean up system fails and the rubbish begins to build up and it becomes increasingly difficult for the brain to function either correctly or at its full potential.

What can you do to ensure you get a better night’s sleep?

  1. Switch off your tech at least an hour before bedtime to reduce your exposure to blue light from your devices which wake you when you should be getting sleepy.
  2. Wind down in the evening so that you’re relaxed and ready to go to bed – keep the lights low, listen to soothing music, have a bath or read a book; anything that is going to soothe and relax you and not stimulate or stress you.
  3. De-stress – get your worries, stresses and to do lists out of your head and onto paper so that you have nothing to ruminate on if you wake up in the night.
  4. Have a consistent bedtime and wake up time – your brain likes routine, and gets confused if your timings are inconsistent, which is why you start to suffer from social jetlag and don’t want to get up in the mornings and feel permanently jaded.
  5. Keep your bedroom a bedroom – it should be clean, tidy, cool, dark and airy; and should only be used for two things, sex and sleep; and not a part time office.

 

Rachel McGuinness from Wake Up With Zest is the ‘Go To Sleep Expert’ who helps busy people who suffer from short or long term sleep issues get a good night’s sleep. Follow this link to find out more:

www.wakeupwithzest.com

Funding for Health and Social Care

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At the Westminster Health Forum in January the topic was “Next steps for improving dementia care: funding, reducing variations  and implementing the 2020 Challenge” . Carer and Research Network volunteer from the Alzheimer’s Society, Andrew Cornwall, spoke eloquently about the cuts and in particular short term contracts staff in the voluntary sector seem to be increasingly  employed under. The evil of the short term contract is covered in my post about Vibrant Manchester so  I was glad to hear it raised very publicly and added my own voice to the points made.

Surrey also featured during the forum, which was of great interest to me, as that is where I live. The funding cuts here and across Surrey have been catastrophic as the borough tries to claw back money from its deficit (something that warranted a special mention in the House of Commons pre Budget debate yesterday). It is not surprising that Richmond is so badly affected – house prices have risen so steeply that even the council’s website concedes that young people cannot afford to buy here. So we naturally have a huge population of older people. At the Joint Carers meeting in February organised by Rare Dementia UK, a gentleman highlighted the fact that the carers grant introduced under the Care Act 2014 was an easy pot of money to access three years ago in Richmond, now, he has been told, it is virtually non existent. Other carers gave examples of inconsistent access to services form across the country such as care co-ordinators and Dementia Advisors. Even when there is money for services there is no guarantee that people living with dementia can confidently rely on their long term continuity.

So has the Budget improved anything or given us hope? The chancellor has ring fenced £2billion to cover the cracks, is it enough? Nigel Edwards, Chief Executive of the Nuffield Trust think-tank, stated:

“The £2 billion announced for social care over the next three years is welcome and desperately needed. But the £1 billion share of that cash promised for next year will plug only half of the funding gap we’ve identified for that year.”

The Conservatives also promised that councils and NHS Trusts which are under severe pressure will be identified and supported. Many are asking whether the social care crisis has actually been exacerbated by the Tories, would we have fared better under Labour? We shall see what the next few years bring but you know what they say, no matter who you vote for, the government always gets in.

 

End of year tidings

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In 2016 Pathways went from strength to strength in terms of reaching people with dementia and their carers. We have given more talks than ever before and received a large number of enquiries to our helpline service. However, we are, like many small charities, struggling for funding. I have done much soul searching since we were turned down for a key grant on December 16th – something of a watershed moment – and whilst I felt like throwing in the towel completely, the love that I have for the aims and objectives we set almost 4 years ago, is as strong as ever. We will therefore continue to run our helpline but will have to cut back on talks for the time being. Hopefully if I can focus on fundraising then we will be able to secure the funding we need to grow and support more people.

Before Christmas I visited a couple and helped them to complete their Lasting Power of Attorney forms – I do not always see first hand the struggles that people living with dementia experience within the confines of their own home. I witnessed a husband doing his absolute best to provide as high a quality of life as possible for his wife who welcomed me warmly into their house like an old friend. It was both heartening and heartbreaking to witness and listen to the day to day challenges presented by malfunctioning technology, and carers who do not have enough time to chat with their client, amongst other issues. It made me more determined than ever to carry on.

If you would like to contribute financially to our work you can send a cheque made payable to Pathways Through Dementia to our Treasurer Christine Alboni: 171 Powder Mill Lane, Whitton, TW2 6EQ, or make a transfer to account number: 65698169, sort code 08-92-99

I wish all our supporters and contacts a very happy 2017,

Sara x

Paying for Care scare stories

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There has been a great deal of coverage in the media this past week about care home fees. Whilst I understand the frustration people feel about their inheritance being eaten up whilst others have their care home fees fully paid by the local authority, there is a lot of misinformation floating around. For example, in The Times today, the claim that 50,000 people are being ‘forced’ to pay top up fees where the local authority funded contribution is not enough to cover their monthly care home bills. No-one can be ‘forced’ to pay a top up. People pay a top up when they choose a home that is more expensive than the local authority budget allows. Someone is only going to be being paid for by the local authority because they have less than £23,250 so where are they paying this top up from? They are not paying it, their family is agreeing to pay it as the top up has to be a sustainable contribution before it can be agreed.

Yesterday I watched a news article which claimed  couple had been forced to sell their home so that they could live in a care home together. In fact the Care Act confers upon local authorities the obligation to offer people moving into care a deferred payment on their home so that it does not need to be immediately sold and can be rented out to cover some of the care home fees. The local authority will place a charge against the property and eventually take back their money when it is sold sometime in the future. If the partner had remained at home the house would have been completely disregarded.

This kind of reporting feeds into people’s fears and insecurities about the whole paying for care system, and gets right on my pip. Let’s have a proper debate with facts, not scare stories!

 

Can I get a Retweet #vibrantmanchester

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For anyone not familiar with Bo-Selecta, this hilarious Blog post title* will be lost on them, but bear with me: during November I toured the country extolling the virtues of Pathways Through Dementia wherever I went, from Brighton to Manchester. The UK Dementia Congress is always a privilege – hearing first hand accounts of how people living with dementia are experiencing the world of health and social care, alongside running my ‘Who Decides?’ workshop attended by around 40 people (at 8:30 AM!), whilst catching up with colleagues from the Alzheimer’s Society, Dementia UK, and MyLife Films, who quite rightly won an award for best Dementia Product. Tweeting has become a rather tiresome ‘feature’ of these events, encouraging people to engage with their smartphones rather than being completely present in the room, a fad I succumbed to at Grant Thornton’s Vibrant Manchester conference at Old Trafford, only in the hopes of getting my Tweet up on the big screen which would act as a free advert for our charity. Other people Tweeted messages such as #excited #socialcare #health – I am not sure what difference this makes to the overworked sector of health and social care but hope that it is a tangible one**

Grant Thornton’s initiative was intended to improve the lives of people living in Greater Manchester and I met some wonderful people all dedicated to the cause. At one point the CEO of Grant Thornton retweeted my Tweet! Nice as it was, the world of health and social care is in a pickle, and no amount of retweeting well meaning Tweets is going to significantly change that. What is needed is money.

I work for another dementia charity part time where the majority of people in my office are on short term contracts. Most are on 12 month contracts which means that about 9 months into the job the employee starts looking at other roles just in case their contract is not renewed. If they secure another role, they leave. It is then impossible for their line manager to advertise the job because there are only 2 or 3 months left on the contract – who is going to apply for a job that might be obsolete in 3 months? So there is a gap whilst the contract deliberations take place and, if the contract gets renewed, then the job is advertised. Assuming the applicants are suitable and interview well, someone is appointed. That person gives one month’s notice and starts in their new position approximately 4-5 months after the last person left.

The people who suffer in this process are people living with dementia – they have developed a relationship with the person who left, they are then without a Dementia Advisor/Community Support Worker/other important professional, for a number of months. The new person needs a DBS check and has to go through their induction before they are out visiting people in the community. It is a crazy situation brought about due to the fact that funders do not know for sure that they are going to have the budgets to pay for community support in the next financial year. Grant Thornton’s conference addressed important issues and was well organised and well intentioned, but without financial backing, all the best ideas in the world will never reach their full potential.

Dementia might be the most feared illness in the UK, having overtaken cancer, and it affects more than 800,000 people – so why is there no money to help us properly support families facing this issue? I met with a colleague from another small dementia charity recently and talked about the struggle for funding. I concluded, half jokingly***, “Well I am looking forward to the day I get my Lifetime Achievement Award at the UK Dementia Congress in the category of ‘The person who did the most with the least’ .” There was a pause before she said ‘There will be some stiff  competition in that category Sara’. Hmm, I think I can feel a Tweet coming on…

*No I won’t give up the day job

** I doubt it

*** I am deadly serious, if I can’t win an Oscar, this will be the next best thing

Working with the Merseyside Police

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Last week I was thrilled to be presenting to around 70 members of the Merseyside Police at their HQ near the Albert Docks in Liverpool – a HR manager had seen my interview with People Management magazine and had called me earlier in the year to arrange the talk. I gave the audience an overview of dementia then concentrated on paying for care, managing finances, welfare benefits, the Mental Capacity Act, and Deprivation of Liberty Safeguards.

Having such a large audience meant we also heard a wealth of interesting questions and the feedback was brilliant, here are some samples:

“First class presentation by Sara, I would highly recommend her seminar”

“If there is a chance that these seminars can be given across the force this would be good”

“I would now feel confident [in tackling legal aspects of the dementia journey] and I wish I had had this information earlier to assist with my in-laws…”

“Sara’s delivery was clear and free from jargon, I found it extremely useful and informative”

“Well delivered and presented, very relaxed, complexities explained”

“Sara Wilcox made a difficult subject much easier to understand”

Questions ranged from whether we means test for the welfare benefits relevant to our client group, how Advance Decisions work with LPA, and what happens to jointly owned properties when one person goes into care. There is so much value to these enquiries being made during the session because the answers illustrate the points I am trying to convey.

Sadiq Khan has made dementia friendly London a priority for his term in office – we have so many large and small businesses across London whose employees will be affected by dementia, every office ought to have the opportunity to hold one of these events to help working carers gain clarity on how to plan ahead for dementia. Please get in touch if you would like to discuss running a seminar for your colleagues.

Dementia Awareness Week (DAW)

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I recently started working at the Alzheimer’s Society 2 days a week as their Dementia Action Alliance Co-Ordinator for Ealing – a great opportunity to support a fantastic team who are working to make Ealing a dementia friendly community. As part of DAW we visited the Southall Town Hall and spoke to the women at the film group there about dementia and answered questions about memory loss and local services.

In addition to this I went with Pathways to the launch of the new Liss Dementia Café where I spoke to people about planning ahead for dementia. They had Singing for the Brain and massage for people with dementia plus stands run by Alzheimer’s Society and St James’ Place Wealth Management.

Today People Management magazine printed an Opinion piece we had collaborated on which highlights the work of our charity and that of Dementia Carer Friendly Workplaces. To read more see here (unfortunately the dreaded ‘sufferer’ snuck in without me realising – apologies!) : http://bit.ly/1Xrs4u9

Hopefully this will successfully highlight our and Mary Sherwood’s valuable work which aims to support working carers and HR departments that strive to reduce stress amongst their workforce.

Working Women and Dementia

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It is International Women’s Day and therefore pertinent to recognise the enormous contribution that women make to the lives of people living with dementia. At the UK Dementia Congress last year, Worcester University presented the research paper ‘Women and Dementia’ which demonstrated that ‘Dementia has not only become the leading cause of death among British women, but they are also more likely to end up as carers of those with dementia than men’.

As many of our followers know, one of the main aims of Pathways Through Dementia is to reach out to and support sandwich generation carers – these are mainly women who are termed ‘sandwich generation’ because they are sandwiched between roles, maybe raising a family and caring for relatives with dementia, or working and caring for relatives with dementia. This juggling act can become very stressful – my own mother gave up work in order to care for and move my grandmother nearer to us because my grandfather could not cope with his wife’s Alzheimer’s disease. Read More

2016

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2015 seemed to be characterised by conference-going in the end but I learnt a lot and met some amazing people, not least Mary Sherwood from the Meteorological Office who has set up an initiative called Dementia Friendly Workplaces. We are going to be working together in 2016 on day conferences for HR managers who are interested in supporting their workforce by setting up similar support systems in their offices.

In addition to taking calls on my helpline, which is utitlised mainly by people referred to me by the lovely Admiral Nurses, and the talks I am delivering, I will be helping to organise DemFest in September in conjunction with RemindMe Care. This will be based on the model successfully piloted by Ian Bradford in Kent last year which welcomed 600 visitors despite them advertising on Facebook alone! We will also be setting up a Facebook page where everyone who is displaying, speaking, and performing can add their details. Read More

Laughing my socks off

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Would you expect to go to a conference on the Mental Capacity and Mental Health Acts and have a rip roaring time? Silly question. It’s always lovely to be surprised in life although I would have enjoyed the subject matter either way: On Friday I went to the 2015 Annual Taking Stock conference at the Royal Northern College of Music in Manchester where we heard fascinating updates on areas such as the Care Act and Advocacy, the Law Commission’s proposals for informal incapacitated admissions, and issues with the revised Mental Health Act Code of Practice. As usual I will bullet point what I regarded as the most pertinent insights:

Neil Allen of the wonderful 39 Essex Chambers (for all things mental capacity and Deprivation of Liberty Safeguards, subscribe to their newsletter) asked ‘Informal Incapacitated Admissions, a Bygone Era?’ and answered his own question by stating ‘Yes!’ and walking off stage. it transpires that the Law Commission are attempting to integrate the situation with DoLS into Mental Health Act practice (a quarter of a million people in the UK are currently deprived of their liberty according to Neil). Neil’s view was that the proposals as they currently stand will introduce a kind of Business class service for people who are objecting to their detention (as they would be entitled to better safeguards) and Economy for those who do not object. Surely then this would lead to a ridiculous situation where people would object in order to receive a higher standard of professional attention, which could also impact on entitlement to free 117 aftercare. He urged us to email the Law Commission with our concerns. Read More