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Pathways news

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

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.

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

Dementia Awareness Week

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Every year, when Dementia Awareness Week rolls round, I think of how far we have come in the last year in terms of how we engage with people with dementia and their carers. Dementia Friends and Dementia Friendly Communities have made enormous strides in this area and are to be highly commended on their passion, drive and achievements. The Dementia Action Alliance continues to meet and discuss the areas of priority for our client group, and the Dementia Challenge conference next month builds on the government’s dedication to defeating dementia. Sadly I do see the phrase ‘dementia sufferer’ continually raise its ugly head in articles and TV programmes but I firmly believe that we are embracing the idea of living well with dementia and are continuing to demonstrate that people with dementia have a positive role to play in society. Hopefully our own little charity will continue to contribute by engaging with people face to face to take the fear out of the dementia journey.

Update on our charity

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Dear All,

As you can see we have been targetted by thousands of spammers over the summer who have run amock as my three year old has run amock and kept me too busy to turn my attentions to my Blog! Our website designer is hopefully going to deal with this shortly.

In the meantime, an update: I continue to answer emails and phonecalls from people who are dealing with various legal difficulties along their dementia journey. We have talks lined up for the Autumn and New Year, details of which can be found on our App which can be downloaded for free from the App store (search for Dementia SOS). Read More

Sponsored run and other news

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So my sponsored run passed its £500 target and with our My Donate page holding £135 at the moment I have raised £631. It was worth the pain! An old pedometer I own unreliably informed me that jogging to our local shops and back = 5K. Turns out, it doesn’t. As professional Park Runners streamed across Bushey Park leaving me in their wake I gazed across the expanse of fern and trees praying that the people I could see miles ahead of me were on a different run. If you want to view the victorious photos go to our Pathways Through Dementia page on Facebook, my husband and ex colleague from the Alzheimer’s Society kindly waited the hour or so it took me to cheer me across the finish line. Read More

Upcoming talks and events

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After a quiet summer everything is starting up again for the Autumn: I am speaking to Westminster Memory Service next week and Admiral Nurses next month (all our talks are advertised on our free App which you can find in your App Store or on iTunes searching for Dementia SOS). Next week I am also attending a seminar with Harriet Harman who is going to be talking about how government policies can support women who are working and looking after a relative with memory loss -the ‘sandwich generation’ Pathways Through Dementia is also keen to help.

We have been lucky enough to attract the support of Stone Rowe Brewer solicitors who sponsor our App, Greenacres Nursery in Hampton Hill who have chosen us as their charity of the year, Mark Green of St James’ Place Wealth Management who is sponsoring our Newsletter, and Nigel Bunner who is a local musician with personal experience of dementia who is raising money for us at his gig in Kinston Upon Thames on October 11th:
www.sugardrum.com

Thank you for visiting this Blog, I hope that it will continue to be useful for people.

Sara

Pathways’ Good News!

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Since Christmas I have been working with our Trustees to register our charity with the Charities Commission. In addition to this we have developed an App and are in discussion with a national firm of solicitors who are interested in sponsoring it. Thirdly, after a wonderful year with the Athena Network I was in two minds whether to renew our membership as we have to be so careful with our money at the moment. The support that I have received from the women at the Twickenham group has been amazing and truly inspirational so I was very reluctant to leave. However, Susan Green of Greenacres Nursery Hampton Hill has offered to pay for Pathways’ membership for the next year. Athena has therefore hosted a Christmas fundraiser for us, linked me to the solicitors firm that may sponsor our App, provided us with a generous donation to renew our membership with the network, in addition to ensuring I am giving more talks and reaching more people in this area. Thank you Athena!