Why I have no time to lose
Some people told us why they have no time to lose.
Lynn Jackson
As a person diagnosed with dementia I definitely feel that there is "no time to lose". There may not be time to help find a cure for my disease at this point, but I would like to see that there is help for other people who are coming along after me.
What I would like to see come out of this years World Alzheimer's Day campaign would be to raise more awareness and educate people about Alzheimer's Disease and Related Dementias.
People first of all need to not be afraid to talk about these diseases. Then they need to get down to the business of helping. We need more government support so that early diagnosis, medication therapy, support and care facilities are readily available to all those who need them.
By educating people, the stigma of having a diagnosis of dementia will be decreased and ultimately removed. With the stigma removed early diagnosis will be sought and people will have a better chance of receiving the medication and psychosocial support they need so they will feel better for longer.
Of course finding a cure would be the ultimate goal. If there is more public pressure to governments to supply our researchers with the necessary funds, any hope of a cure would be seen sooner.
James Mckillop
There is no time to lose!
When someone is experiencing the early stages of dementia they can do themselves and others untold harm and they can be helped to minimise the long-term effects. This will slightly relieve Governments world wide of the vexing question of what to do with ever increasing numbers of citizens with the illness.
In my case behavioural problems led to a very rocky time in my marriage (as there was no indication that I had an illness causing the problems) and almost led to a divorce and ostracisation from my children. With a quicker diagnosis a lot of heartache could have been avoided. I was having driving difficulties and it was only due to the grace of God that I was not involved in a crash several times. I was attempting to drive down the wrong side of dual carriageways. With other drivers, pilots, sea captains, bus, train and lorry drivers and anyone who operates heavy machinery, it is imperative that a diagnosis is made before they do some serious damage to themselves or others. I know of one who was a passenger pilot.
I also experienced problems as a pedestrian and was almost knocked down on several occasions, especially where there were filter lights. I thought as a driver and moved off into the road when they came on, thinking I was a driver and they were meant for me. I got many a toot and gave many a curse before I twigged what was going on. I could easily have been killed/injured.
My sense of judgement was impaired and I could easily have fallen prey to a con man or anyone else who could have taken advantage of me.
You would not allow someone with toothache to suffer for years. Yet many of us are allowed to "suffer" for years before getting a diagnosis or receiving support.
Many have to give up work without realizing why they can no longer cope. With a quicker diagnosis people might be able to come to an arrangement with an employer for less responsibility or transfer of work work to a fresh area, where the illness will not have detrimental effects.
People can get access to medication which can help many, but not all, people. This can enhance the quality of life, reduce strain on the carer, be less of a drain on the social services and delay entry to a nursing establishment. The fiscal side of this is that the governments save money.
People with dementia can get access to self support groups where they can meet people like themselves and get help in accepting their diagnosis. Again this helps the person, the carer and can prove to lessen demands on social services. A money saver.
Carers can get access to self support groups and support services. Undoubtedly they had a hard time during the run up to diagnosis and things can get harder. If they do not receive timely support, they themselves can become ill, which could mean a further drain on medical resources and perhaps the admittance of the people with dementia into care. Take care of the pennies and they will take care of the pounds. Carer support is not money wasted.
I would like to see student doctors and nurses and community psychiatric nurses being trained to spot the signs of dementia, while of course discounting other possibilities. They seem badly trained in spotting the illness especially where the person is "younger". More quality support services which will reduce deterioration as long as possible. More and better respite services.
Maureen Mckillop
I feel that there is no time to lose in getting a diagnosis.
In our case an early diagnosis would have meant earlier treatment with drugs to control the high blood pressure, which was causing the dementia.
It would also mean earlier access to benefits and support groups for both the carer and the person affected by dementia, which in turn can enhance your quality of life.
Peter and Ann Ashley
My name is Peter Ashley and I live with my wife, Ann, in the United Kingdom.
It was in the year 2000 after a three-year period of illness I was sent to see a Consultant Neurologist and his team. After extensive scanning and cognitive testing they told Ann and I the news - "Peter you are likely to have a form of Dementia known as Dementia with Lewy Bodies and that whilst your condition is in its very early stages there is treatment but no cure at this stage". Having carefully assessed our characters the doctors realised that an honest statement of my illness is what we would both want to hear; they were right.
For several weeks thereafter we both mourned the prospects facing us; the fact that 'life' could go on for many years but not as we had known it, my condition might be stable for a time but then degrade and I would become more and more dependant on Ann. Not concerned for myself I worried greatly about the load and effect this would place on Ann's shoulders, my only consolation being the knowledge that Ann was a caring and loving person by nature and had tremendous strength of character to face any situation that might arise. We thought about our children our grand children and how my condition would affect their lives but realised how supportive they would be.
But then, as if by magic, we both realised that there was no time to lose, we had to make the best of our situation. The drugs I was taking were having a positive effect on my health, I quickly realised that if I tried to continue doing the things I did best it could have nothing but a positive on my life. As a former company director I started to put my skills to the test.
In the last four years I've walked this path, with Ann at my side, and life has generally been good. I have my bad periods and I know within myself I'm going down hill but I don't let it worry me. I work hard contributing to society in the areas of health and working for others who like myself have dementia. I try not to give my condition too much thought and I travel extensively throughout the UK, Ireland and other parts of the world talking about dementia and giving lectures and presentations.
We still try and enjoy our lives together and laugh and have fun with our friends. This dreaded family of diseases ahs brought a new circle of friends and that can only be viewed as positive.
Ann and I have a saying we want to share with you:
I'm not dying of dementia - I'm living with dementia
Jan Killeen
Public Policy Director, Alzheimer Scotland - Action on Dementia
There is no time to lose for governments, local administrations and communities to work in partnership with people with dementia and their families to help them to live their lives as normally as possible, by providing:
- early diagnosis and support
- opportunities for people with dementia and their carers to have a voice in developing policies and services to support them
- formal and informal services in the community, that are flexible and able to meet the changing needs of people with dementia and the changing needs of their families
- legislation to support the rights of people with dementia and to protect them from abuse
- anti-stigma campaigns
There is no time to lose for governments to seize the imperative to invest now in services to meet current and future needs and to fund medical research that will impact on the lives of people with dementia and on future demand for services.
Where next?