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Raising awareness of young-onset dementia at the House of Lords

Jill Walton

Written by Jill Walton and Tim Shakespeare

Today we’ll be visiting the House of Lords to raise awareness of young-onset dementia. Along with our colleagues at University College London, we’re very excited to be involved in organising this event and hope to spend a productive afternoon raising awareness that dementia can affect younger people; that it doesn’t only affect memory, and that better support is required to meet the particular needs of people with different symptoms and a younger age. The event, hosted by Baroness Sally Greengross OBE, will be attended by people affected by young-onset dementia, members of the House of Commons and the House of Lords, representatives from charities (including Alzheimer’s Research UK) and other health related bodies (such as the College of Optometrists and Care Quality Commission).

What is young-onset dementia?

People with symptoms starting before the age of 65 are described as having young-onset dementia and there are more than 64,000 people with the condition in the UK. It is important to know that people with younger onset dementia are much less likely to have memory problems than older people with dementia. Instead, they may experience problems with language, vision and behaviour or personality as the first symptoms. The circumstances of younger people with dementia might be quite different from older people; for example they may be in paid employment and have young or teenage children living at home. Because of this; people with young-onset dementia need age specific and disease-relevant provision of care. However these needs are not routinely met by existing services.

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There is also a real need for funding for research to understand more about young-onset dementia. Prof Nick Fox from the Dementia Research Centre at UCL will speak about some of the pioneering research he and his team are doing into young-onset dementia, which benefits from funding from Alzheimer’s Research UK.

How will this event help?

We’re hoping that this event will raise awareness of the particular challenges faced by younger people with dementia, and that these can be met by improving knowledge about these conditions, allowing more timely diagnosis and providing relevant information and support to people who have been given a diagnosis. Members of the five support groups we run for people with young-onset dementia often have difficulty getting access to the support they need, and report a lack of understanding about their condition from medical and other professionals. We hope that this event is a positive step towards addressing these needs.

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3 Responses to Raising awareness of young-onset dementia at the House of Lords

  1. Avatar
    Pasna 9 December 2014 at 12:57 pm #

    Really looking forward to this raising awareness event, to work together towards a better quality of life for a younger person with dementia and their family in the UK.

  2. Avatar
    Craig 9 December 2014 at 8:22 pm #

    I have had first hand experience of the fact that there is a lack of understanding and tolerance of persons suffering with this condition and their families from professional organisations within my areas local authority. Our family still find ourselves in an adversarial position with those charged with providing care.

    The need to address this shortcoming in duty of care owed to those affected is of paramount importance.

  3. Avatar
    Sandra Pember 15 December 2014 at 9:14 am #

    Hi, I lost my mum to Alzheimer’s 3 years ago . A year later my best friend ……then in her late 50’s was diagnosed with it . I totally agree that there needs to be more public awareness of early onset .

    Can I tell you of her/our experience of how she was diagnosed please ?

    Chris was a very competent and well liked solicitor /advocate in Gloucester , where she still lives …….did an awful lot of good representing clients etc . Her ”voice” was her meal ticket .

    She started to experience problems with memory , so much so that she went on numerous occasions to see her GP ………. he assured her nothing was wrong, ”take a holiday ” ! Her work was suffering so she paid to see a Neurologist , who , again, said nothing was wrong ……. this happened an at least one more occasions that I know of . Chris is a perfectionist and was painfully aware that she wasn’t doing her job properly and that the firm she worked for were losing patience with her difficulties ……having been assured by her consultant that there was nothing medically found wrong . This continued for a while until Chris handed in her notice and resigned . BAD MOVE ! Had she stuck it out she’d have been medically retired and had an income until she reached retirement age next November . She was obviously in no state to know the implications of resigning , and has had no help whatsoever from the firm of solicitors or any other legal people . This was at a time of her experiencing terrible hallucinations at night , and being expecting to work sometimes for 24 plus hours straight off , being ”on call” …….sometimes even longer . At this point, I was only getting to know Chris , and it wasn’t long before I saw signs of what I’d seen in my mum and encouraged Chris to go back to the Neurologist………which she did , paying once again , only to get the same answer ……… nothing found ??!!! At this stage she’d been without work for several months and gone onto JSA , after using up all her savings , and was struggling to keep a job in a charity shop for more than 3 days ! It was an horrendous time for her with her struggling to understand even basic things and filling out forms to get benefits was just dreadful . No help from anyone , she was like a zombie at times.

    I stepped in and encouraged her to go to see the fairly new ( at that time ) 2gether team , who actually picked up quickly a big problem once she told them about the very severe hallucinations ………which the Neurologist had ignored !

    The 2gether team were very thorough and took a lot of time doing tests and brain scans , and eventually got the diagnosis of early onset Alzheimers and Chris went onto Aricept ……..which worked wonders and stopped the hallucinations and Chris has worked hard to relearn the alphabet and was able to read again and she’s doing a lot better than in those ”dark” days . Being well travelled and having had a wonderful command of language skills she’s got an excellent positive approach to the disease most of the time .

    I help her as a friend to live as independently as she can . I’ve been able to get her all the benefits she’s entitled to , but it’s been a hard slog because of the years of not having a diagnosis so therefore not getting any income at all at first , then living on £67 a weeks for 2 years .

    What really annoys me is that there was no help or contact from the firm of solicitors she’d worked for for so many years and because of the lack of medical diagnoses Chris resigned from her job ……….at a time when she’d have been in no fit state to have made a judgement on what she was doing , thus leaving her not being able to have claimed leaving on medical grounds etc .

    Sorry this is so long , but, it does show what happens when doctors/consultants do not look carefully when being presented with an early case of Alzheimer’s/Dementia .

    thanks for your time listening to Chris’s story .

    I’m , what can loosely be called a disability right’s campaigner locally, and have had many articles published in our local paper …. the latest highlighting the need for better Care and Awareness for those who have early onset Alzheimer’s as it’s wrongly assumed in the media that it’s a disease of the elderly .

    Sandra.

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