Woman with dementia pens open letter to reach out to others living with condition

In her message Anne (49) from Newtownabbey, highlights the importance of receiving an early diagnosis and the benefits of becoming involved in Empowerment groups for those recently diagnosed. Coming to a Dementia NI group and participating in events helps to re-build confidence quite often lost with a diagnosis of dementia. Commenting on the group Anne states,

“Dementia NI is an organisation that was set up by people who are living with dementia. People who knew EXACTLY what I was going through and knew what it felt like to have dementia - because they have it too. We regularly hold group meetings which enables us to meet and share our stories with others in a similar situation and support each other. This understanding is why Dementia NI is so important to me.”

Dementia NI groups are not all about having a place of friendship and peer support, the groups also meet to make a difference. Members raise awareness about dementia and are involved in many different projects, such as dementia-friendly communities, giving talks to different organisations, taking part in networking events, and feature in media campaigns such ‘Still Me.’

Anne continues,

“We take the opportunity in our groups to talk with the people who provide our services in Northern Ireland. By doing this we can influence the support that we receive to help make it more relevant to our everyday lives.”

Anne is currently helping to establish an Empowerment group specifically for people with dementia in Carrickfergus. Dementia NI are setting up a group there for people living with dementia in order to reach out to others living with the symptoms and support them in their local community. 

Commenting on the new Carrickfergus group being formed, Tara Collins Programme Manager of Dementia NI, said: “Dementia Empowerment Groups are being set up in each health trust area across Northern Ireland. 

“At present, we are encouraging individuals with a diagnosis of any type of dementia who reside within the Northern Trust area, to join their local group in Carrickfergus. We are delighted with our progress to date and have received huge support throughout Northern Ireland.”
If you are interested in learning more about Dementia NI groups in your area, please contact Dementia NI on 028 9068 6768.
ENDS

Notes for Editors

  1. Please see below for Anne’s letter.
  2. For Dementia NI media enquiries, contact Tara or Ashleigh on, T: 028 9068 6768.
  3. Press releases are available from our website www.dementiani.org
  4. Join Dementia NI on Facebook at: www.facebook.com/DementiaNI/ or follow us on Twitter at: www.twitter.com/Dementia_NI
  5. Dementia NI was incorporated as a company on the 15th January 2015 by five people living with dementia, who wanted to ensure that the voice of people living with dementia is at the core of policy, practice and service delivery across NI.  They are now establishing Dementia Empowerment Groups across the whole of Northern Ireland to provide a place where people with dementia can come and share, reflect and provide peer support. Members use their experiences and opinions to make a difference in the services and support provided to them to better meet their individual needs and challenge the stigma of dementia.
  6. The Carrickfergus group will be the 7th empowerment group now to be established by Dementia NI, with another soon to be established in Portadown. We currently have groups established in Belfast, Antrim, Londonderry, Holywood, Irvinestown and Craigavon.

 

 

Anne's Letter

To whom it may concern,                             

"People often say there is no point in finding out that you have dementia, there is currently no cure so why bother upsetting yourself or family members by receiving the diagnosis? I think when people make these decisions on other peoples’ behalf they forget there is a person like me behind that diagnosis. Yes, it is a terminal illness however there are benefits to knowing. People need to realise that there are medications to slow down the process and to ease the symptoms.

Is it fair to be left to wonder what is wrong with us? I don’t believe so. We (the individual’s living with the symptoms) need to be given the opportunity to understand what is happening to OUR bodies, to plan for OUR futures, and to also get the most relevant help and support that WE would like, being signposted to the relevant organisations to help us live happy lives.

When I was first diagnosed with Dementia and MS, I researched a lot. Unfortunately, I kept coming up against brick walls, everything seemed to be geared towards people over the age of 65, and nothing seemed to be suitable for my interests or age group. My circumstances were so different to someone of the ‘stereotypical’ retirement age that you would presume only get dementia. People who develop dementia at my age (49), may like myself have young children, a mortgage, hold down a full-time job and have a whole range of different circumstances.  After a while searching I resolved myself to the fact that there was no help or support out there for anyone like me. It was a very depressing time, I felt ostracised from society and lost as to what would happen to me.

Then when two years later my daughter won the MS Young Carer of the Year award, I was put in contact with Dementia NI who offered me help and support. The relief that there were people willing to help and understand me was so overwhelming that I broke down to tears. They were sad and happy tears; my emotions were all over the place. I just couldn’t believe after two years trying to cope on my own that someone did want to help. I wasn't alone anymore and that was such a fantastic feeling.

Dementia NI is an organisation that was set up by people who are living with dementia. People who knew EXACTLY what I was going through and knew what it felt like to have dementia - because they have it too. We regularly hold group meetings which enables us to meet and share our stories with others in a similar situation and support each other. This understanding is why Dementia NI is so important to me. Being around other people who also believe that life doesn’t end after a diagnosis of dementia is very uplifting. Dementia NI have members of all ages but with one thing in common, we all have live with a type of dementia.

It was a little nerve racking going along to my first group meeting. I know how apprehensive new members can feel as I was once the new member too, but to me anyone who gets up and helps themselves is a brave person.  Dementia NI offers you a place of friendship and through this friendship you might like me, build newfound confidence. You will have the opportunity to learn new skills, also to go to new places and meet new people.

Dementia NI is not all about having a place of friendship and peer support because we also meet to make a difference. A difference to our own lives and for others who also live with dementia in Northern Ireland. We take the opportunity in our groups to talk with the people who provide our services in Northern Ireland. By doing this we can influence the support that we receive to help make it more relevant to our everyday lives.

We do this in the hope of helping not just ourselves but also others to assist them to live well and change the stigma associated with dementia. Being part of Dementia NI has enabled me to realise that I'm still a person with opinions worth listening to. I never want anyone to feel the way that I did before Dementia NI welcomed me into their organisation. I have been a member now for over a year and in that time Dementia NI has given me support, encouragement, and friendship;
but most importantly they have given me my confidence back and empowered me with a voice to help others.

Since joining Dementia NI, I have been to lots of meetings, I have taken part in the ‘Still Me’ Public information campaign, been interviewed on television and radio, taken part in events held in Stormont and the City Hall. A few of us were also recently invited to a reception hosted by the Mayor of Mid & East Antrim Council who recognised the contribution that people living with dementia are making to create more local dementia friendly towns. As you can see Dementia NI offer lots of opportunities to stop you from becoming socially isolated and for personal development, all within your own personal boundaries and abilities.

I know it is not easy taking that first step, but I would like to reassure anyone who might like to come along to a group that you will be warmly welcomed. Having dementia to me is not about my life ending. My life is no longer is about having no hope or being depressed, it is now about enjoying every moment that I can, making memories, and fulfilling dreams. I feel blessed that I was given the time and the knowledge of what my future will be, it has given me the wisdom to stop wasting my life.

Due to my early diagnosis, I feel that I am now in the lucky position of being able to do all the things I ever wanted to. Dementia interferes with your ability to do things you used to be able to manage, such as looking after yourself. It is not just about memory loss, symptoms will differ from one person to another, but can affect a person’s orientation, perception, communication, judgement, understanding, decision-making and ability to learn. Dementia is a progressive illness, which means that over time it will affect your abilities and more areas of your life. It is so important to seek medical help as soon as you can, I would urge anyone to seek an early diagnosis. Please do not live in denial with what is going on, you will only make matters more difficult for yourself and your loved ones in the long run.”

Anne Scott.