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What a Local Dementia Action Alliance means to me

Sunday 10 July 2016

What a Local Dementia Action Alliance means to those of us with dementia

Lorraine 2I’m Lorraine aged 63.  In the summer of 2014 I was diagnosed with ‘young-onset Alzheimer’s disease’ by a neurologist at Medway Hospital.  Tests and investigations took over three years to come to a conclusion.  The tests consisted of MIR brain scans, cognitive testing and lumber punches.

I was then working in the Crisis Home Treatment acute mental health team at Medway Hospital in Kent.  I worked at Medway hospital for over 24 years.

 Working in a busy and challenging role I believed I was experiencing stress due to work load and personal difficulties at home.

I was devastated beyond belief being given the diagnosis of early on-set Alzheimer’s disease.  I experienced a wide range of emotions and concerns.  I am now retired due to ill health, not my decision but one made for me by my managers, occupational health consultant and human resources for KMPT NHS. 

I remember my first step entering my journey, living with Alzheimer’s.  I went along to my local dementia café. I saw people much older than me and some in the later stages of dementia, which I recognise well from having worked on a dementia ward in Medway Hospital. I thought ‘is this it then?’ I felt so unhappy, confused and frightened of my journey ahead of me.

I thought to myself ‘I’m going to do something about the situation that I now find myself in’, especially when I realised there was nothing, in Medway, for younger people with dementia.  I am still ME and still enjoy the same things and activities I enjoyed before the diagnosis.  I am on a mission to educate people’s understanding of what living with Alzheimer’s is really all about.

There are different forms of dementia and it does affect people of ALL ages.

DAA at B2BLast year The Dementia Action Alliance was launched in Medway.   I am Chair of the steering group.  This group is working towards raising awareness in our local shops, restaurants, libraries and many public places about difficulties people face living with dementia and improving services.

I want people with dementia not to be stereotyped.  There are different forms of dementia and it does affect people of ALL ages.

This is my mission, my life and conviction – to put that message across to as many people as possible. In November 2015 I won Kent’s most inspirational person living with dementia, an award that I am very proud of.

The film Still Alice came out at the cinema last year.  It came out just at the right moment for me.  It gave me inspiration.  It made me stronger to go about my mission.  I have spoken live on air for Radio Kent and I have now spoken at many different events.

I don’t feel daunted.  I have such conviction.  I want people to go and tell others and help stop the stigma.  There is so much that can be done to help us with our daily lives.

I want to influence places where we can carry on living our normal lives.

I want to stay independent.  I now live alone.  One of my daughters lives nearby.  One day I will have my driving licence taken away from me by the DVLA, because of dementia.  I have a driving assessment every 6 months.  I do have a disability bus pass that I use when I experience a ‘not so good day’.  I am learning the bus routes by taking photos of buses and bus stops and making notes.    When a journey has been tried and tested I enter the information in my bus note book.   Bus timetables for me are difficult to read and focus on.  The numbers are close, many numbers too close together and the font too small. The experience is very much like a‘motion sickness ‘. It would help to have a simple route for each journey with photographs and instructions in a large font provided by the bus company.

I have a very good GP practice.  I would like to see all GP’s as helpful as mine has been.  I want to influence places where we can carry on living our normal lives, such as cinemas, fast food outlets, restaurants, libraries, transport, banks and supermarkets.  I want to reach schools and colleges.

I may have dementia but I do my best to be positive.

I would like to see a logo in the window of places that are ‘dementia friendly’. It would also be a good idea to have a plaque inside the building with names and photos of staff who are ‘Dementia Friends ‘ who want to help and at least one of them on duty during their working hours.

This is my work now and I am dedicated to the cause, to getting the message out.  I’m doing it to benefit people living with dementia and future generations.  I hope that the campaign for Dementia Friendly Communities can make a real difference to the lives of people like me, both now and in the future.

I may have dementia but I do my best to be positive. I carry a GPS tracker so I can still remain active, but my daughters know where I am, if I lose my way.  I have recently tried the British rail special assistance service and feel that with their help I can now travel to Victoria station on my own.

At home I still cook but the fire brigade have fitted a device to my oven to prevent fires.

Where would I be without the Medway DAA ? My world would be very different.  I don’t like to think where I would be without the Medway DAA.  I would be in a very dark place.  I would lose my skills and I would be depressed.  My life wouldn’t be worth living as I would have no purpose.  I would only exist. 

I want a community that through its actions will understand, respect and support me.

My life is different now but I don’t want to stay at home because I feel as if I am a burden.  I want to be independent and be part of the life around me life.  I don’t want to have health issues that will end up with me having to go into a care home.  As the number of people with dementia is likely to double every 20 years, the importance of early intervention and the understanding of community has never been greater.  I want a community that through its actions will understand, respect and support me. I want to feel part of my community and still be able to contribute.  I don’t want problems.  I want solutions.  Creating a dementia friendly community takes time, collaboration and investment and involves everyone from schools to bus drivers.  It involves individuals listening, showing respect and offering a helping hand.  It requires an understanding of the symptoms and being able to reduce the stigma of this disease. Enhancing the quality of life for people living with dementia can reduce costs for the community and the cost of long term health care.     

But I am Lorraine first, and a person with dementia second

A dementia Friendly Community is important to everyone who is diagnosed with dementia, but especially important to those of working age who have so much taken away from them –  their jobs, income, property, relationships and a sense of purpose. Circumstances vary from person to person, but people are left with a huge void.  The Medway DAA has helped me increase my self- esteem and helped me find the person I once was.  Instead of feeling like a square peg in a round hole I feel accepted as the person I am today – a person with dementia. But I am Lorraine first, and a person with dementia second.  I lead a different life, but it is still a fulfilling one.  As long as my life is full, I am happy.

Lorraine and arrivaA personal highlight of the work of the Dementia Action Alliance has been that Arriva buses have joined and are trying to help people with dementia and started making their bus drivers Dementia Friends.  For me this makes travelling less fearful and daunting and I can relax on bus journeys.  It enables me to continue living a full and independent life.  It empowers me.

On behalf of myself and all the people in Medway living with dementia who have no voice to speak for themselves, I would like to thank all the existing members of the Medway DAA.  You have made a real difference to me and many others. Thank you for your respect and your understanding.