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Staying independent

Dementia

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    What is dementia?

    Dementia is a word that means there is a loss of nerve cells in the brain. Changes in the brain might make it harder to remember things, think clearly, or do everyday tasks. It can also affect how someone feels or acts.

    If you have dementia, you might sometimes forget names, get confused about time or place, or find it harder to follow conversations. These changes can be frustrating, but you are not alone. Many people live with dementia, and there is support to help you adjust to the condition so you can continue to be very much a part of your family and the wider community.

    If you think you may have dementia

    If you are feeling forgetful, finding it hard to concentrate, or not enjoying things like you used to, it’s a good idea to talk to your doctor. These signs can be caused by dementia, but they can also be caused by other things, like depression.

    Seeing your doctor can help you find out what’s going on. If it is dementia, getting a diagnosis early means you can get the right help and support.

    What it feels like to have dementia

    Dementia affects people in different ways, and is a very individual experience. These words are from people in the East Riding of Yorkshire who are living with dementia.

    • “The loss of independence, having to ask for help, is not easy to get used to.”

      Person with dementia

    • "I have real difficulty in having to unscramble the sound to make a sentence to mean something - whether that’s asking a question myself or trying to respond to someone else."

      Person with dementia

    • "It’s not about dying over and over. No. It’s about being born again!"

      Person with dementia

    • "Whatever I’ve got I make the most of it."

      Person with dementia

    How to find help and support

    There is lots of support available to help you live with dementia.

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    For non-emergency support, Monday to Thursday 9am - 5pm, and Friday 9am - 4.30pm:

    Call DVAP on 01482 396368

    The free National Domestic Abuse helpline is available 24/7:

    Call the National Domestic Abuse helpline on 0808 2000 247

    If you are in immediate danger and need urgent help call 999.

    Useful numbers
    Samaritans (24/7)
    116 123
    Men's Advice Line
    0808 8010 327
    Victim Support
    0808 1689 111

    Good life with dementia course

    The Good Life with Dementia Course is a six-week long course that helps you learn and understand your diagnosis better alongside other people with dementia. Each course is created by and delivered by local people living with dementia. It is an approach created by an organisation called Innovations in Dementia which exists to improve how people with dementia see themselves.

    To find about courses, email Damian@myid.org.uk

    Alzheimer’s Society

    Alzheimer’s Society is a charity that supports people with all forms of dementia, and they have groups and activities set up all across the country. Alzheimer's Society East Riding is the branch that covers all of Hull and the East Riding, and you can find information about dementia, local support and latest news at their website.

    Visit the East Riding Alzheimer's Society website

    Understanding dementia

    Learning about your condition can help you understand what to expect and what help might be useful.

    Support groups and activities

    Spending time with people who understand dementia can be a great way to make friends and avoid loneliness.

    Search our dementia-specific groups and activities list

    Work and employment

    It is estimated that around 1 in 13 people with dementia are diagnosed while they are of working age. If you want to continue working, there is support in place to help you do so.

For advice on what your rights are, and how to talk to your employer, visit the Alzheimer’s Society website.

    Money

    If you are worried about having enough money to pay for bills and other things you need, you can talk to the dedicated Your Money team for confidential advice.

    You may also be entitled to benefits to help you financially. See our disability support page to find out more.

    Living at home

    If you have worries about how you can live safely at home you can ask the council for a care needs assessment. We will meet you and help you understand what you can do well, and what you might need more help with.

    Things that might help you feel more confident at home might include:

    • Lifeline - an alert system that lets someone know if you are unwell or fall
    • Homecare - having trained carers visit you at home to help you take care of yourself
    • Aids and adaptations - adding equipment or adapting your home to make it easier to move around

    You can get general advice about looking after yourself here

    For ideas about looking after your home, you can see our tips here

    Fire safety

    You can get a free home fire safety check from Humberside Fire and Rescue. They can check your smoke alarms and fit new ones if needed.

    Find out more on the Humberside Fire and Rescue website.

    Or call 0300 303 8242

    Herbert Protocol

    If you are worried that you might forget where you are or become disorientated while out and about, you might want to complete a form known as a Herbert Protocol form that will help your loved ones find you quickly. You can find more information about this at the Humberside Police website.

    Legal matters

    Driving

    Being diagnosed with dementia does not automatically mean you have to give up your driving licence, but you must tell the DVLA. They will decide if you need a new licence, can have a licence for a limited time period, if you need to have your car adapted, or if you need to stop driving.

    You can find the form on the DVLA website.

    Alzheimer’s Society has also created a factsheet about driving with dementia.

    Lasting power of attorney

    A power of attorney, also called a lasting power of attorney, is a legal document that allows somebody you trust to make decisions on your behalf if you are unable to. You get to decide who that person is, and what they can help with.

    Setting it up now, while you’re still able to make decisions, means your wishes will be respected. It’s not about giving up control—it’s about making sure your voice is heard, even if you can’t speak for yourself later.

    You can learn about the types of power of attorney and how to set one up on the Alzheimer's Society website.

    Get involved with research

    Research into dementia and how it effects people is an important way of helping organisations improve how they support people like you. The Living With Dementia Toolkit was created after a seven-year-long research programme, and is just one example of how research can make a difference. There are also examples of how research helps and opportunities to get involved at the Empower Dementia website.

    You can find out more about local research opportunities by contacting the Humber NHS research team. You can call on 01482 301726 or email hnf-tr.researchteam@nhs.net

    To find out about national research opportunities, you can sign up to the Join Dementia Research database. Find out more about research opportunities at their website.

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