'When I was diagnosed with dementia I felt robbed of my future... I was worried about what life would look like for me and who would ultimately have to take care of me'
When Allison Batchelor was diagnosed with Alzheimer’s disease two years ago, at the age of just 57, she was terrified of what the future held. But, as the Dundonald woman tells Stephanie Bell, she is living life to the full and working for others with dementia
Mum-of-two Allison Batchelor's world fell apart when she was diagnosed with dementia two years ago. Like many people, the Dundonald woman, who is also a grandmother to two young children, had little understanding of the condition and what lay ahead.
Two years down the line and she has found a new purpose as she dedicates herself to helping educate society about dementia and change those misconceptions which initially filled her with fear.
From a point where she was convinced her life was over following her shattering diagnosis of Alzheimer's disease in April 2017, Allison (59) is striving now to live life to the full and, if anything, is more driven now than ever before.
As Dementia Action Week runs this week, until May 26, Allison has emerged as a voice for people living with the condition and an active advocate for positive change.
She says: "As you can imagine, my diagnosis completely floored me, I was petrified. My misconception of dementia meant I automatically thought of the later stages rather than being aware that someone could actually live with the symptoms, so I thought that I was at the end of my life.
"I was angry because I felt robbed of my future.
"I just couldn't believe that it was happening to me. I was worried for what the future held, what life would look like for me and my family who would ultimately take on caring responsibilities.
"I felt depressed and could not see a way of moving forward after the diagnosis, where to turn for help or know even what help was there, if any.
"Ironically, at the same time I felt relieved to finally know what was wrong."
Allison, who lives in Dundonald with her husband Tom (59), a retired technical officer, and daughter Leah (29), also has a son Ryan (32) and grandchildren Charlie (12) and Macy who is two years old.
At the time of her diagnosis, Allison was still working as a British sign language interpreter but her condition meant that she has had to give it up.
For some time she had suspected all was not well when she found herself struggling to cope with simple everyday tasks.
She did visit her GP a few times and although she scored high on the cognitive tests, deep down she knew that something wasn't right.
She says: "I would become disorientated in familiar places, places that I would usually be very comfortable going to. I would become a little dazed; it was as if a fog had come down over me.
"My brain felt a little like a washing machine, my thoughts, emotions and rationale were spinning round and around in my head but there was no clarity and rhyme or reason to why I was feeling that way.
"I was eventually referred to a consultant and after a few visits over an 18-month period I was diagnosed with having Alzheimer's disease.
"I didn't know then that the disease came under the umbrella of the term dementia.
"I didn't know that there was a wide range of different dementias that also come under that umbrella.
"I think this is a common misconception and the general public still need to be better informed through education on dementia, how it really affects people and the symptoms surrounding the condition.
"People understand better when it comes to cancer. There is a whole range of different cancers - breast cancer, bowel cancer, skin cancer etc. I don't think people realise that, when it comes to dementia, this describes a whole range of symptoms associated with a condition."
Dementia is an overall term used to describe a wide range of symptoms associated with the deterioration of the brain and memory, thinking, behaviour and the ability to perform everyday tasks are affected.
Symptoms differ from person to person but orientation, perception, understanding, memory, decision making, the ability to learn, communication and judgment can suffer.
There are many types of dementia including Alzheimer's disease, vascular dementia, front temporal dementia and Lewy body dementia. Dementia can happen at any age but is more common after the age of 65.
Allison was referred to the dementia navigator service, which is offered by all five health trusts here. The service works to provide information and support, face to face or over the telephone, and it can also direct people to other services which might help.
Within a week of her referral, Allison had an appointment which marked the beginning of her getting her life back.
She says: "The navigator spoke to me and reassured me and listened to what I had to say and she believed I would benefit from getting involved with Dementia NI.
"She also spoke to my husband and through this he also got the support and training he needed. This meant he learned that he had to be patient and that I was still to be allowed to do things myself - that it wouldn't be helpful if he took over and did the things that I was still very much capable of doing.
"Really, without the navigator's visit, I believe today I would be sitting at home and getting more and more depressed - I know my condition would have deteriorated much more quickly.
"After the navigator appointment I quickly had a visit from Ashleigh, the empowerment officer from Dementia NI. This meeting changed my life for the better and also my outlook on life. After chatting with Ashleigh, I quickly realised that there was life left to live and that life was certainly far from over."
Dementia NI is an organisation set up by five people who had a dementia diagnosis and felt that people with the disease didn't have a voice. Members are determined to put people with dementia at the core of policy, practice and service delivery across Northern Ireland.
Allison says: "Traditionally it was the carers who were listened to and people regularly made presumptions about what those living with dementia wanted or needed, without even asking or consulting with them.
"I have personal experience of this, as on one occasion my husband and I had a visit from a healthcare professional. The questions were all directed to my husband whilst I was still perfectly capable of answering them myself; the focus was all on him as a carer.
"I listened for as long as I possibly could and then reminded the care worker that the meeting was about me and not my husband. I really felt that I was being completely ignored."
Allison attends a local Dementia NI empowerment group in Bangor and has found the peer support she gets at it invaluable.
Being able to talk to someone in a similar situation, who knows exactly what it is like, has given her hope.
"Other members who are also living with dementia helped me to realise that there is still hope," she says. "While there is currently no cure, support from others who know exactly what it is like to live with similar symptoms is invaluable as no one else can truly understand what it is like to have dementia unless you live with it yourself."
Allison believes there are many stigmas still surrounding the condition and she and her friends at Dementia NI are especially determined to change the terminology used in reference to it.
She says: "People often focus on the later stages - terminology is regularly negative and often people like me find it derogatory and offensive.
"Words such as suffering, doting, doolally, away with the fairies, etc, do nothing to help my confidence and self-esteem.
"I do not know what my future holds. I am by no means currently suffering from dementia. I completely accept that things can change very quickly but, until they do, I am determined to keep living my life to the full."
Another misconception she is determined to change is that people with dementia tend to be older and can't look after themselves.
The reality, she insists, is very different. "I am living well, I can still make my own decisions. I still drive although I must take a yearly test to ensure I'm safe on the road," she says.
"I play tennis weekly, I attend art classes, and I sit on many steering groups involving anything to do with improving the lives of people living with dementia like myself. I am very determined that I am not going to sit in the corner and will make the best of the life that I have to live.
"Local charity Dementia NI is an organisation that has given me a voice and empowers me with the confidence to talk at events so that the public, healthcare professionals and anyone who wants to listen, gains a better understanding of what it is really like to live with dementia and the challenges people like myself face on a daily basis.
"Dementia NI has given me a purpose and a reason to get up in the morning and to keep going. I will be eternally grateful to them."
Having a purpose is, Allison says, vital and she believes without it her condition would deteriorate a lot quicker.
The charity also works with organisations to help make services or support more accessible for people with dementia to help them maintain their independence and remain involved and integrated within their community.
Allison continues: "Simple things like using public transport and shopping become very overpowering and, at times, impossible. But knowing that organisations in your local area are understanding means you can go into them with confidence, knowing if you get stuck or panic or become confused they will understand and be able to assist you in an appropriate way.
"I hope that by sharing my story I have shed some light on what life can be like living with a dementia diagnosis. I want to get across that it isn't all negative, that there is hope and that with the right peer support and understanding from others you can still keep living.
"I want to help get away from the negative news stories about all the doom and gloom surrounding dementia. I want my story to encourage others to go to the doctor if they have concerns and not be afraid to get tested.
"A diagnosis means you get the correct support and you can start living again. I believe that it is only when you accept your diagnosis that you can continue to live comfortably.
"I would like to thank my family for the continual love and support that they show towards me. Knowing that they are there to look out for me makes a big difference to me being able to live as independently as I can."
Allison adds: "I've pinched a statement that another Dementia NI member said at a conference - I have dementia, but dementia does not have me."
If you would like to find out more about Dementia NI, contact: Dementia NI, 54 Elmwood Avenue, Belfast, BT9 6AZ, tel: 9068 6768 or visit www.dementiani.org
Recognising symptoms of dementia
Some of the most common symptoms of dementia are:
This is one of the first signs of dementia, especially Alzheimer's disease. Memory problems become more severe and persistent and may be more apparent to family and friends than to the person themselves.
Changes in behaviour
This may include agitation, repetitive behaviour, shouting, sleep disturbance, hiding, hoarding and losing things and others.
Communicating and language
A person with dementia may have trouble finding the right word and they may repeat words and phrases. However, there are many ways to help those with dementia communicate better.
Dementia can affect a person's sleep patterns. This is separate and different from normal sleep difficulties that come with getting older.
To mark Dementia Action Week, help improve the lives of people living with dementia by putting on an event, such as organising an information stand at your local supermarket, library or village hall; invite people with dementia to an art or singing event; and fundraise for research and the care of those with dementia.
Source: The Alzheimer's Society. Find out more at www.alzheimers.org.uk