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13/Jan/2017

 

#STILLME

It is estimated there are 19,000 people living with dementia in the north of Ireland, but only some 13,000 have received a formal diagnosis. Looking ahead it’s expected that by 2051 there will be around 60,000 people with dementia.

Since September 2016, the #STILL ME dementia awareness campaign has been running across Northern Ireland.  The campaign features local people living with dementia talking about how their condition affects them. 

The first phase of the campaign ran until the end of October and highlighted the ways in which we can support and be more inclusive of a person living with dementia.

The second phase of the campaign runs until the end of January and has focused on the possible signs of dementia and the benefits of an early diagnosis.

By talking openly about dementia and its impact on daily life, people with dementia, family members and carers can begin to access the practical help and support available.  Timely diagnosis allows people to receive treatment and care to enable them to live independent and fulfilling lives.

It is estimated there are 19,000 people in the north of Ireland living with dementia, but only some 13,000 have received a formal diagnosis.  Looking ahead, it's expected that by 2051 there will be around 60,000 people with dementia.

Early diagnosis means people with dementia and their families can access the appropriate care and support services and help them plan for the future.

People with dementia have told us that many of the difficulties they encounter could be overcome if more time and attention was given to understanding their needs and involving people with dementia in service planning.

With the numbers of people who have dementia set to increase, how can we improve our health services to better meet the needs of people with dementia?


Comments are now closed.

Cathy Grieve 19 Jan 2017 09:34

It is difficult to find words to adequately describe the sadness we as a family feel in our growing awareness of the isolation and despair that can be linked to Dementia.Whilst we continue to marvel at the kindness and patience of those who care for our mum , suffering with this condition, we cannot deny the frustration and fear we feel as we continue to watch her slowly fade away. It is sad to realise that they don't really know her as we did. She had such a strong bubbly personality, popular with everyone she met and loved by all, especially her family , one of the many things she has lost. I fully support all those who continue to raise awareness of this heartbreaking condition, in the hope that we will find new and better ways in which to maintain the dignity of those who suffer from Dementia, whilst providing empathetic support for their friends and family.

Mary Magee 17 Jan 2017 23:18

I feel that any campaign that raises awareness for dementia patients and their families will benefit, hopefully provide more support and a better healthcare system. Unfortunately dementia patients are discriminated against as they are expected to pay for all aspects of care unlike any other chronic illness or disease. There needs to be a fairer system, very often those who neglect their health develop chronic long term disease but are not expected to pay any of the costs for care. Therefore, on behalf of my lovely mum who has worked hard all her life, payed tax, national insurance is left paying for all her care. I would like to see a system that does not discriminate against dementia patients, after all she still has rights, had views, opinions and made decisions just like everyone else but sadly a diagnosis of dementia takes them all away.

libby maguire 17 Jan 2017 16:44

Firstly having had first hand experience recently of how my mum and we as a family have been treated in hospital i really feel care of patients with dementia is sadly lacking. Staff of all levels must have training in dementia care any time i tried to ask staff anything the first thing i was meet with was "you do realise your mother is confused".
we as a family were completed isolated out of mums care and were made to feel like a nuicence if asking anything.
So all levels of staff need training this includes medical, nursing and ancillary staff.

Iris Oliver 16 Jan 2017 22:10

I recently became aware of specialised villages designed to accomodate people with dementia to live in a safe, supported enviroment. Perhaps this is something we in Northern Ireland could look to provide as mot everyone with dementia needs to be in nursing homes etc. they are often placed there for their own safety but they loose their independance.

Eileen Cairnduff 16 Jan 2017 17:44

I agree so much with what Gary Hunter has said. My Mum recently died after 7 years of Vascular Dementia. She certainly was not 'still her' for a lot of that time. So these ads do tend if anything to trivialise this terrible condition. The good they have done, however, is to get people talking about this terrible set of illnesses.

Peter 16 Jan 2017 16:35

More facilities for people with dementia, such as where the lady on the poster lives - assisted housing. People often end up in residential or nursing homes.

'how can we improve our health services to better meet the needs of people with dementia?' - interesting that you say 'health services' when in fact it is social services that is left to help. Why is it that someone with a physical brain disease such as Alzheimer's are left to pay for their own care? I find it disgusting that the elderly, who have paid taxes all their lives, much more than this generation, end up paying £1000's for their own care, instead of it being provided under the NHS for which they have already paid.

The Memory Clinic in BCH is all but useless. After her family got a referral to said clinic from her GP (who hadnt noticed any symptoms of Alzheimer's despite apparently having a specialism in mental health!), the clinic simply did the standard MMSE test, said yes it looked like she had Alzheimer's, prescribed the standard medication which I suspect does little, and sent her on her way. A follow-up appointment was made about 2 years later, where they agreed she had gone downhill over the past 2 years. We knew that already!

Carol McCullough 16 Jan 2017 15:53

I have read Joan Grieve’s comments and completely agree with the points made. There needs to be greater awareness of how this system works. If you have property, or savings over a certain amount, you are expected to pay high costs for nursing care, your clothes and toiletries. I am not making a generalisation but there is a potential for people who have never worked (through their own choice) having all these costs covered. I think people who have sufficient savings could pay for clothes and toiletries but the costs of care rapidly eat through savings and money received through the sale of their property. It is an unfair system that can cause added distress to people who are still aware of what is happening and families. Many are by no means wealthy. There should be a fairer system of means testing that takes fairness into account regarding property and significantly raises the margin for savings above which paying for cost of care is expected.

thomas Adams 16 Jan 2017 10:50

I fully understand that living with people who suffers with dementia can be very difficult for the family because you don't know if they have dementia or they are just forgotten stuff due to their age. I think it's important that you treat the person as normal as possible but at the same time be able to look after your own health as well. I would Also like to know why because of the assembly's being in a state of flux why it effects the waiting list for knee and hip replacement is put on hold. I personally is waiting for a knee replacement and I think it's unfair that we are being held to ransom because of the local government has made a bad decision

Joan Grieve 16 Jan 2017 10:18

The health service firstly should have a standard payment to cover care costs for Dementia. They need more qualified staff in nursing homes and hospital who specialise in this area to deal with dementia, if they increase salary it will attract more professionals.

People with dementia should not be penalised if they have property and forced to sell their homes to cover care costs. My mum who lived on her own at the time when she was diagnosed with dementia had to eventually sell her house to pay for nursing care.

As a family we tried to care for her a much as possible at home, we had a rota to look after her but in the end we had to seek support from professionals to help us. When the disease advanced we were devastated to hear that mum and those suffering from this cruel disease have no other choice but to sell up, while others suffering from cancer and other illnesses do not. Because dementia is a mental illness suffers lose all their rights and family members have to go along with what the Courts and Trust's demand to fund long time care. Mum is in the very late stages of dementia, her 6 children visit her daily in a nursing home. She pays the full costs because she had property while others - who never worked or who did not own property get the same care free. We could not protect her assets even though she had a will and we all knew her wishes,this does not matter, decisions are already made by those in power. All mum's hard work and paying national insurance contributions when she worked full time did not make a difference, her home was sold regardless. It is an unfair system, everyone should pay the same amount for care. I feel very strongly about this. My mother is homeless and penniless, its totally an unfair to dementia patients and the system needs changed.

Irené Murphy 16 Jan 2017 09:34

Much greater support for carers is needed, to enable people who have dementia to remain at home. Bearing in mind that the majority of people with dementia are older people, it can be expected that a large number will be living with spouses who are also elderly and who may have their own health and/or mobility issues. Unless there is appropriate/significant support for such carers, it will not be possible for people with dementia to remain safely in their own homes. Supports need to include a much more extensive sitting service and the provision of 'back to bed' care at bed time, rather than early evening.

David Harold Briggs 16 Jan 2017 09:20

People are screened for bowel, prostate, breast cancer etc automatically, after and up to certain ages. The up to certain age confuses me and is also something which looking at. Is there provision that the same chance for early diagnosis that people over a certain age can present themselves for a test so as to alert or reassure of their situation.

Pamela Frazer 16 Jan 2017 09:20

This has been an excellent campaign. So many more people are now talking about dementia and this can only be a good thing.

Gary Hunter 16 Jan 2017 08:27

I think the 'Still Me' series of ads are disingenuous. The people in the ads are obviously not representative of the majority of dementia patients. 'Life can still be good with dementia.' Really? My wife works with dementia sufferers and their families. The ads fail to address the distress the condition causes; the gradual erosion of one's personality, the fear and sense of social dislocation, the violence and inability to attend to one's personal care. 'You might have to be a bit more patient with me', and 'I might forget the names of flowers', etc. If only that's all there was to it!
I know it's meant well but the campaign is inaccurate. It doesn't address the sheer misery and uncertainty which is the experience of most dementia sufferers and their carers. 'I'm Still Me'? No.You're not. Balance please.