Beti George's words

These are Beti George's words

"David was diagnosed with Alzheimer’s 6 years ago and I’m his sole carer.

Apart from the first two and a half  yrs, when he took part in a new drug trial, we’ve had no support at all.

I’m lucky in that most of the time he’s contented and still has a great sense of humour.

He was always gregarious and loved to socialise. He still does and nothing pleases him more than when people call to see him and keep him company

There are however, “bad days” - and that is when I would appreciate being able to call on a “support worker” who has been dementia trained of course.

There needs to be a revolution in dementia care. In every community there should be a bank of carers properly trained in caring for people with dementia, so that someone like me can call upon when in a crisis. It’s only those who live 24/7 with someone with dementia who can really appreciate what “crisis” means in this context. It really leads to despair and the feeling of utter isolation.

The Welsh Government emphasises their vision of “care in the community.”

All well and good but it means nothing unless support is at hand.

I’m appalled at the lack of proper dementia training there is among professionals working with older people in the community.

Yes, there is a dire need for more training facilities and DUETcare aims to address this through offering a humane approach to caring by understanding what the person with dementia is experiencing and how to connect with the person."

I hear people everyday with similar sentiments to Beti, people need support, care and understanding in their communities. We also need to listen to the voices of those who have a diagnosis of dementia as well as their loved ones. Often those voices get ignored because it can take time, patience and skill to understand what is being said as the dementia can affect those very parts of us.

 DUETcare aims to provide people with the knowledge, skills and values  to maintain a connection through finding creative ways of communication.

 

Please consider a small pledge to make this happen: we have until 20th November 2015

Thanks Jane

 

https://crowdfunding.justgiving.com/jane-mullins

http://bit.ly/1PNY9K6

 

Dementia Training DUETcare - The Starting Point is Language

3Days of Crowdfunding to go for dementia care training programme - The starting point is language

Phew, I didn't realise how difficult it would be to raise money this way, after many attempts of applying for funding through governmental schemes I thought I would appeal to the people that matter. I have had to compete with Pudsey during this appeal which has been a challenge and he has been around quite some time now. But funding for anything child related or cancer related seems to yield great results, why is dementia such a difficult one? We are all aware of our ageing population that we talk about in an abstract kind of way as if it doesnt really relate to ourselves!!! and how the risk of  being diagnosed with dementia rises with age, and here I do apologise to those who have dementia who are younger as you are truly a marginalised group of people that need specialist support and care, DUETcare's principles will still apply but we must be aware of the age and generation to ensure that we approach people within the meaningful context of their individual lives.

If we don't individually know one person with dementia personally, yet, then that time is just around the corner. Soon you will know someone, may be a friend, mother, father, grandparent and we really need to know how to continue to communicate properly and maintain the relationship with that person whom we love.  I am really passionate about making this change to how we view and relate to people with dementia (and I don't like writing in this way as if they and people with dementia are a group of people tied by this label as these principles are across the board and apply to all). Listening to an old friend recently whose wife is having "cognitive difficulties" reinforced to me the importance of language and how we use certain words. For instance, one example of how DUETcare is different from many other dementia awareness training  programmes is that many of those courses run a session called: Understanding difficult behaviours and how to manage them!! Difficult behaviours!! manage them!!!   With DUETcare we look at understanding behaviour, explaining why a person who has dementia may behave in a certain way and if we know that the person may have difficulty in understanding what is being said to them, or has difficulty with their vision and their visual perception then we may understand how frightened and confused that person may feel. Surely then we need to know how to approach them in a caring, feeling, sensitive way, just as we would like to be approached. With the events over the last week throughout the world, in Lebanon and France and in Africa we need to spread love, not retaliation or further hatred, love is what makes our world a magical place and DUETcare's principles are all about love, connection and positive energy.

3 days left, please pledge so that I can set up this training programme for the people around us, as you will be contributing to a movement of care and you never know when you might need it!

https://crowdfunding.justgiving.com/jane-mullins

http://bit.ly/1PNY9K6

Thanks for reading

Jane x

DUETcare From procrastination to reality

DUETcare: From procrastination to reality

During a conversation with a fellow passionate PhD student and now great friend (well we were procrastinating really over coffee when we should have been writing) the ethos of DUETcare was born. Dr. Vicky Richards (yes she has her PhD now!!) and myself (still working on it!) started discussing about our passions when it came to communication, connection and care. Vicky has many years experience working with visually impaired people as a rehabilitation officer and myself as a nurse, predominantly working with people who have had a stroke, are older and/or have dementia (I think we worked out that between us we were talking about just under 60 yrs experience !!)

Results from the first phases of both our research brought out the need to raise awareness of the needs of people with visual impairement and of people with dementia by developing an empathetic approach to communication. Both procrastinating heavily at this stage we talked about the values that we felt were most important for working within any care or hospitality setting. Sharing such a passion for this we waxed lyrically for some hours!! Then realising the time, two minutes before I left to rush across town to pck up my children from school, I sat and worked out an anagram and within seconds, the anachronym DUET(care) was born; Dignity, Understanding, Empathy Training.

Three years later, I have taken a leap of faith and am developing DUETcare; a training, education, mentoring and coaching support programme for people caring for someone with dementia (the knowledge, skills and values can be transferred to all areas of care). Major thanks goes to Vicky and to Angharad Brown from Ardine Training who have offered much support and advice (I met Angharad in a serendipitous way, and that, my friends will be the subject of another blog).

So much of what has happened in my life and the synchronistic events that  occurred have led me to this moment and many will be the subject of later blogs (including Udder, my son's cuddly cow being lost and then finding him, led me to meeting a Professor on a hilltop looking for an ageing specialist to undertake a PhD to explore issues around ageing and tourism!!!!).

DUETcare is the result of listening to people with dementia  for many many years, from the novice Student Nurse working on Medical wards, who moonlighted as a Care Assistant in a nursing home in the mid 80s, through to caring for older people in Coronary Care, ITU and Elderly Care as a Staff Nurse, a Manager of a Nursing Home in Swansea to an almost expert Dementia Research Specialist Nurse in the Memory Teams of Bath and Cardiff. Here I worked on the pharmaceutical trials of the few dementia drugs currently licensed and this included having to undertake cognitive assessments with people with dementia. To try and do this in the most gentle way to minimise the dreadful effects of the person sitting in front of me knowing that their faculties were failing and this being highlighted every 6 months to register the deterioration. was probably the hardest part of my job. 

I will admit that I have a fascination for Neuropsychology (fuelled by reading many works by the Late great Oliver Sacks, as a student nurse) but the reality of actually measuring a person's cognition in front of my eyes was a humbling experience and then listening to and supporting the person following these tests made me acutely aware of what the person was experiencing. I suppose the merging of the art;  how to understand the human experience with the science; what is physiologically occurring, makes up some of the basis of DUETcare.  In addition to this, my role involved supporting the partners and families too through completing depression and burden scales and sitting and listening and supporting.

As well as my experience, DUETcare draws from so many disciplines, such as neuropsychology, nursing, philosophy, sociology, psychology and quantum physics......yes you heard right.  And I think this is the crux of DUETcare; how we can enter through the mist of the person's mind into their world and make a connection is the key. DUETcare will train, teach, coach and mentor people to do this through many creative individualised ways alongside educating on the nature of dementia and its individuality. When we understand the nature of dementia, we can understand peoples' behaviours and help minimise agitation and fear and move towards a model of wellbeing and growth for all involved.  

DUETcare has a strong, caring for carers ethos, again whether the carer is a partner, family member or paid carer, DUETcare enables all to be able to care for themselves.

If you'd like to be part of this cultural shift in how we train people to care for someone with dementia; whether husband, wife, family member, formal carer or health and social care professional, please contact me at jane@dutcare.co.uk and/or visit my crowdfunding site and pledge a contribution

https://crowdfunding.justgiving.com/jane-mullins

Contributions will go towards developing the training documents, creating publications and booklets, setting up carers' courses, reminiscence materials and equipment to help deliver.