Dementia

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    Dementia is a term used to describe various disorders involving a loss of brain function, such as thinking, memory, reasoning and language. There are many types of dementia. The most common types are:

    • Alzheimer’s disease
    • vascular dementia
    • dementia with Lewy bodies
    • frontotemporal dementia
    • mixed dementia such as, vascular and Alzheimer’s combined

    In the UK it affects around 850,000 people. This impacts not just on the person who has dementia but also on families and carers but also wider society. There are more than 40,000 people under the age of 65 currently living with dementia in the UK.

    Dementia diagnosis and treatment

    Symptoms of dementia can include:
    • problems with short term memory or loss of memory
    • lack of concentration
    • confusion, including anger and aggression
    • problems with communication and language (struggling for find the right word)
    • self-neglect
    • mood changes
    • sleep disturbance and
    • hallucinations

    it is important to remember that there could be many other reasons for having any of the above symptoms. Having any of them does not necessarily indicate dementia. If you are worried, speak to your GP.

    First steps in diagnosing dementia

    Go to see your GP. A GP will ask about your symptoms and other aspects of your health.  Although the GP will discuss memory loss and lapses with you, these can also be symptoms of other conditions.

    They’ll also ask if you’re finding it difficult to manage everyday activities such as:

    • washing and dressing (personal care)
    • cooking and shopping
    • paying bills

    To help rule out other causes of memory problems, the GP will do a physical examination and may organise tests, such as a blood test and urine test.  This will help to:

    • rule out other conditions that may have similar symptoms and may be treatable, including depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid deficiencies
    • rule out other possible causes of confusion (eg poor sight or hearing), emotional changes and upsets (eg moving house or bereavement), or the side effects of certain drugs or combinations of drugs
    • allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)

    The GP will conduct a memory examination using a tool called The Mini Mental State Examination (MMSE) or GPCog.  This will help them decide whether to refer you to memory specialists.

    If the GP has been able to rule out other causes for your symptoms, they’ll refer you to a healthcare clinician who specialises in diagnosing dementia, such as:

    • a psychiatrist with experience of treating dementia (an old-age psychiatrist)
    • a doctor specialising in elderly care (a geriatrician)
    • a doctor specialising in the brain and nervous system (a neurologist)

    These doctors will work with the Memory Assessment Service.

    While you are waiting for your referral to come through, you can use the Next Steps website which explains the Memory Assessment process.

    You may find the Forward with Dementia website useful. It is created by and for people living with dementia, carers and health care professionals.  It includes a toolkit that you can use to save articles and practical tips. You can share and print articles.

    The Royal College of General Practitioners in partnership with Alzheimer’s Society have endorsed a symptoms checklist you can use if you (or someone you know) are concerned about their memory, and wish to start a conversation with your GP. You can view their checklist here

    Tests that are used to help diagnose memory problems

    There are a few tools that a clinician (Nurse or Doctor specialists) may use to work out if you have some memory problems. Not all memory problems lead to a dementia diagnosis. The results from the memory screening tools will be used alongside your history, symptoms, a physical exam and the results of other tests, possibly including brain scans. A consultant will make the diagnosis of your condition and you will be informed face to face, so that your next stage of treatment can be discussed and you can ask questions.

    Usually around three months after your diagnosis, you will have a follow up review to see how you are coping, though you will receive phone calls in between to check how you and your family or friends are managing.

    The Memory Assessment Service is based at the Campus of Ageing and Vitality and is part of CNTW NHS Foundation Trust. You can download their Patient Information Leaflet.

    Certificate of Vision Impairment (CVI)

    Not everyone with dementia has visual impairment. However, you may be referred to an ophthalmologist and if this is diagnosed or becomes apparent later on, this certificate serves as a formal record of a patient having a visual impairment which will be important when you are seeking to access social care support or financial benefits. Without certification, care and support providers are often unclear of someone’s level of vision and what practical support they require. You should file your CVI.

    Dementia treatment

    There is currently no cure for dementia, but there are medicines and other treatments that can help with some dementia symptoms.

    There are four medicines available in the UK which can be prescribed for dementia.  They are available as tablets, liquids, tablets that dissolve in water, or patches.  The medicine you receive will depend on the type of dementia that you are diagnosed with. Some dementias do not respond to medicines and so they are not always prescribed.

    In the later stages of dementia, you may develop some challenging behaviour and your medicines may change.  Symptoms and signs of challenging behaviour include: aggression, wandering, anxiety and hallucinations.

    Delirium

    Delirium is quite common in people with dementia and can be caused by their condition or another medical issue, such as an infection.

    Thanks to Tees Esk Wear Valley NHS Mental Health Trust for allowing us to use this film.

    Local help and support

    If you, or someone you know, are diagnosed with dementia, it can be a very worrying and upsetting time. There is a lot of advice and support available to help you to live with the condition and to maintain your quality of life

    Alzheimer’s Society Newcastle provides confidential information, advice and support services to people with dementia, their carers and professionals. Their services include:

    • Dementia advisers to listen and give you support and advice via phone or email
    • information, practical guidance and home visits to people who are worried about their memory and ongoing support to people affected by dementia.
    • Public information talks

    Byker Lodge is a Newcastle City Council support service for people in crisis or being discharged from hospital with a diagnosis of dementia.  Contact Community Health and Social Care Direct at Newcastle City Council.

    Caring Hands support people in the East of Newcastle with befriending and counselling services, as well as practical support.

    Chain Reaction run a Dementia Friendly Friendship Hub at Tesco’s Kingston Park in the Community Room. This includes games, Arts, Crafts and more. No cost & refreshments provided.

    Dementia Matters are a specialist dementia service provider in Newcastle. They offer a range of services including their Bradbury Day Centre in Newcastle. They also run a Dementia Friends Gardening session with Chain Reaction.

    Dementia UK have Admiral Nurses who offer information and support to anyone effected by dementia. You can book a virtual appointment or a face to face appointment to speak to a specialist dementia care nurse.

    Newcastle United Foundation run a monthly Memory café with different NUFC football legends attending each month. The cafe includes quizzes & reminiscence activities.

    Scotswood Garden run supported gardening sessions for people with dementia in a relaxing natural space.

    Silverline Memories run dementia cafes, lunch groups, carers support and have a memory bus to help people get out and about to events.  Some of their events include Reminiscence sessions where they bring a range of items of Memorabilia to spark memories and story telling.

    Search Newcastle offer a range of services that are dementia friendly such as Memory tea’s, singing for your brain and more.

    St George’s Church, Jesmond have St George’s Café on Fridays in the Church Hall which welcomes everyone and those effected by dementia. They also have a dementia friendly singing session ‘Sing and Socialise’ on Fridays.

    St Vincent’s Dementia Group on the last Monday of the month 2pm to 4pm. They offer free activities, socialising and refreshments. All welcome

    The Newbridge Project run a monthly Memory Cafe session in collaboration with Shieldfield’s Forum Cafe

    Adult Social Care at Newcastle City Council give information and support to adults in Newcastle who are finding day to day activities more difficult. This could be anything from moving around your home, activities of daily living or caring for someone.

    Telephone: 0191 278 8377

    Email: [email protected]

    You may be entitled to Welfare Benefits and should speak with someone about your circumstances.

    Bottle in the fridge scheme helps store your personal and medical information in your fridge door, so it can found quickly by emergency services, if you have an accident or sudden illness at home. This simple and free idea could help to save your life. It is also useful to people who may not be able to give their health information to the emergency services.

    Caring for someone with dementia

    A carer is someone who provides unpaid help and support to an adult family member, parent, friend, partner, child or neighbour who could not manage without their help. This applies to adults, children and young carers looking after an adult.

    • Looking after someone read more about carers support that is available in Newcastle. This includes short breaks for carers for rest and recuperation.
    • Carers needs you are entitled to discuss your needs with adult social care at Newcastle City Council to find out what support is available to you.
    • Carers Wellbeing Fund you can apply for funding to allow you to take a break, learn something new or prepare for employment.
    • Carers Allowance is paid to people over 16 and who spend at least 35 hours a week caring for someone with substantial care needs.

    Newcastle Carers offer a range of services to carers including:

    Silverline Memories run dementia cafes, carers support and have a memory bus to help people get out and about to events.  Some of their events include Reminiscence sessions where they bring a range of items of Memorabilia to spark memories and story telling.

    John’s campaign encourages health and care providers such as hospitals (rehabilitation units, care homes and similar) to welcome the carers of people with dementia and let them stay with the person as often as possible.

    Caring for someone with dementia factsheet from Age UK.

    Alzheimers Society Living with Dementia film on You Tube.

    National information and and support

    Decision making with dementia

    If you have dementia you may find it difficult to make decisions. Planning ahead is important in case you are unable to make important decisions in the future.

    Tell your carers and family members what you want. You can make legal arrangements to make sure that your wishes are carried out. For example you can arrange:

    • Power of Attorney to help you with your health and wellbeing or financial management if you have been diagnosed with dementia
    • Wills

    The Mental Capacity Act is a law that is designed to help. The Act intends to protect people who lose the capacity to make their own decisions and will:

    • allow you to appoint someone (such as a trusted relative or friend) to make decisions on your behalf once you lose the ability to do so, including decisions on your health and personal welfare, as well as on your financial matters
    • ensure that the decisions made on your behalf are in your best interests
    • introduce a Code of Practice for people who support individuals who have lost the capacity to make their own decisions.

    See Making decisions (Mental capacity) for more information.

    Technology that can help

    Dementia can make aspects of day to day life more difficult for the person living with the condition and in some cases it may also put them at risk. Around the home, things like repeatedly mislaying keys can be frustrating, while others like leaving the gas on and unlit can be dangerous.

    Assistive technology refers to devices or systems that support a person to keep their independence, safety and wellbeing. There are many different ways that devices can help people with dementia, and also give carers support and reassurance when looking after someone with dementia.

    Examples of assistive technology include:

    • motion sensor prompts and reminders for example, a sensor placed near the front door could remind someone to lock the door, or one in the kitchen could remind someone to turn the oven off.
    • automatic calendar clocks that display whether it is day or night-time
    • medication aids to remind people when to take their medication
    • locator devices to help someone find things they regularly misplace, such as keys or a wallet
    • safety and community care alarm devices including fall sensors, telephone blockers and automatic lights

    Read the Alzheimer’s Society’s article on assistive technology for more information.

    AT Dementia provides information on assistive technology that can people with dementia live more independently.

    Telecare, equipment and aids

    There are tools that can help if you struggle with mild memory loss. For example, simple calculators, noticeboards or sticky notes. Read our article on Keeping your brain active for more information.

    Equipment, home adaptations and aids can help you live independently if you have problems with daily tasks like cooking, washing, going to the toilet, moving around, seeing or hearing.

    The Herbert Protocol for missing people

    The Herbert Protocol is a national scheme to record useful information about a vulnerable person that can be used by police if the person goes missing.  Carers, family members and friends can download and complete the form to give vital details about the person they care for including: medication needed, emergency contacts, places they’ve lived previously and a photograph.

    The form can then be handed straight to Police if needed. It can make a real difference.  It could help reduce the amount of time a vulnerable person is missing, bringing them to safety even quicker.  For more information visit Northumbria Police’s website.

    Extra Care Housing

    The Council now has  extra care housing schemes specifically designed for people with Dementia.

    Schemes comprise bungalows with 5 bedrooms. The 24-hour support is over and above that required for the standard extra care schemes. New schemes are being planned.  Contact Community Health and Social Care Direct between 8am and 5pm to arrange a conversation about your needs.

    Music and dementia

    Music has huge benefits for people with dementia and those caring for them. It helps reduce agitation, depression and anxiety, alongside improving general health and wellbeing.

    Here are a few practical tips on how to bring music into their lives:

    • create a playlist and share it online over Skype or FaceTime as part of a musical conversation
    • listen to a radio show.  Try BBC Music Memories and Reminiscence radio on MixCloud
    • music for Dementia is a website that provides information and advice about using music for people with dementia and has it’s own advert free radio station M4D.
    • watch live music events: TV programmes, apps, streaming video services, and websites
    • watch a musical film: research has shown that films centred around music, interactivity and simple plot lines can be ideal for people living with dementia. Favourites include: Singing in the Rain, any Laurel and Hardy film, The Sound of Music, Wizard of Oz, West Side Story, Jungle Book, Grease and Mary Poppins.

    Music Mirrors  offers an opportunity to make a brief life story in your own words, with sounds and music embedded to spark memories later.

    Playlist for life offer resources to select music and have a video on how to create a playlist. Newcastle Libraries have signed up to be Help Points to distribute and promote the Playlist for Life’s booklet ‘Create the Soundtrack of Your Life’. You can pick up a copy from any of the libraries.

    These resources can be useful when someone moves from one care setting to another or go into hospital, it will help them connect with unfamiliar carers who might have few other clues for getting to know them.

    Look out for local musical events taking you back to the past or as therapy  – the Semitones and Nordoff Robbins therapy

    Dementia friendly activities and events

    Please read the Local support and Carers support sections above.  InformationNOW has a searchable category of dementia events which include Carers Cafes, dances and support groups.

    Dementia Friendly Screenings at the Tyneside Cinema are fortnightly daytime screenings for people with dementia and their families and carers.

    Newcastle Libraries run the ‘Reading Well Books on Prescription‘ scheme. The collection provides:

    • information and advice about dementia and normal ageing
    • support following diagnosis
    • practical help for carers
    • personal accounts of people with dementia and their relatives and carers
    • suggested therapeutic activities.
    • if you have a Newcastle Library card you can pick the books directly up from one of Newcastle’s participating libraries, or you could be prescribed a book from your GP or care worker.

    Chain Reaction run dementia friendly groups including a Friendship hub with opportunity to chat, have a cuppa, play games and socialise with others; as well as a dementia friendly gardening session. Places are limited. Call to find out more information and book a place.

    Dementia Space at the Grainger market offers an opportunity to meet and talk to a wide range of charity representatives.

    Scotswood community garden run dementia friendly gardening sessions

    Life Story Work in Lockdown  a resource for carers and people with dementia during coronavirus lockdown

    The BALTIC Centre for Contemporary Art run Creative Age sessions. These are friendly, creative and inclusive sessions for older adults exploring contemporary art in a dementia-friendly environment. Contact Equal Arts for more information.

    Jesmond Library have dementia information and books. They also run activities.

    Nordoff Robbins Music Therapy Centre brings music therapy to schools, care homes, hospices, hospitals, mental health services, and brain injury units. Music therapy has many benefits for people affected by dementia – improves memory and cognitive skills, facilitates communication and provides social connections.

    Dementia or Memory cafes and day clubs

    Dementia cafes are a safe, comfortable and supportive environment for people with dementia and their carers to socialise. They also provide information about living with dementia and local services that are available.

    Search Newcastle and Silverline Memories run regular memory cafes and other similar groups.

    You can find a full list of Dementia cafes in our Food and Friends article or on our Events and Activities tab.

    Information in other languages

    Alzheimer’s Society has a translation service and produces a number of information sheets and other publications in different languages.

    Abuse

    People with dementia can be more at risk of abuse. There are different types of abuse and signs to be aware of. Types of abuse include: financial, physical, emotional, sexual and neglect. Vulnerable adults can be groomed or targeted by criminals or abusers.

    Contact Adult Social Care at Newcastle City Council if you are worried that you or someone you know is being abused or neglected in Newcastle. Read more about adult abuse and domestic abuse on InformationNOW.

    Dementia and risk prevention

    There is no single factor that has been identified as causing dementia. However, the following factors are thought to contribute:

    • active brain  keeping your mind active is likely to reduce your risk of dementia. Regularly challenging yourself mentally seems to build up the brain’s ability to cope with disease. One way to think about it is ‘Use it or lose it’. Find something you like doing that challenges your brain and do it regularly. It’s important to find something that you’ll keep up.
    • age  It is possible to develop dementia early in life but the chances of this increase dramatically as we get older. One in five people over the age of 80 has a form of dementia. One in three people over the age of 95 has a form of dementia.
    • diet  what you eat may have its greatest impact on brain health through its effect on heart health. The best current evidence suggests that heart-healthy eating patterns, such as the Mediterranean diet, may help protect the brain. A Mediterranean diet includes relatively little red meat and emphasises whole grains, fruits and vegetables, fish and shellfish, and monounsaturated fats including nuts, oily fish and olive oil.
    • gender  women are more likely to develop Alzheimer’s disease than men, however, vascular dementia is more common in men.
    • genetic inheritance  there are cases where dementia is clearly inherited from one generation to the next. However, in the majority of cases, the effect of inheritance seems to be small. If a parent or relative has dementia, your own chances of developing it are only slightly higher than if there were no previous cases in the family.
    • medical history  specific conditions such as multiple sclerosis, Huntington’s Disease and Down’s Syndrome can increase the chances of developing dementia. Conditions that affect the heart can increase the risk of developing vascular dementia. This includes high blood pressure, diabetes and stroke.
    • physical exercise regular physical exercise may help lower the risk of some types of dementia. Evidence suggests exercise may directly benefit brain cells by increasing blood and oxygen flow to the brain.
    • sleep helps the brain and body repair and enhances memory
    • persistent alcohol use may lead to brain damage.

    Some risk factors for dementia, such as age and genetics, cannot be changed. But researchers continue to explore the impact of other risk factors on brain health and prevention of dementia. Some of the most active areas of research in risk reduction and prevention include cardiovascular factors, physical fitness, and diet.

    Cardiovascular risk factors

    Your brain is nourished by one of your body’s richest networks of blood vessels. Anything that damages blood vessels anywhere in your body can damage blood vessels in your brain, depriving brain cells of vital food and oxygen. Blood vessel changes in the brain are linked to vascular dementia. They often are present along with changes caused by other types of dementia, including Alzheimer’s disease and dementia with Lewy bodies. These changes may interact to cause faster decline or make impairments more severe. You can help protect your brain with some of the same strategies that protect your heart – don’t smoke; take steps to keep your blood pressure, cholesterol and blood sugar within normal limits; and maintain a healthy weight. 

    Am I at risk of developing dementia? Alzheimer’s Society explains more about the possible causes of dementia and how to reduce your risk of developing the condition.

    Taking part in Research

    You may be interested in volunteering and talking about your experiences of dementia:

    Other useful information

    Other useful websites

    • The Dementia Centre has a range of materials including designing homes for those with dementia or sight loss
    • Dementia Tip-Share is a website for people who want to learn from and share with others. The Tip-Share website is bursting with Tips, work-arounds and short cuts. All from people with dementia themselves.
    • Dementia UK
    • Healthtalk.org
    • My House of Memories is a project and app from The National Museums Liverpool developed to help carers and health and social providers deliver a positive quality of life experience for people living with dementia.
    • NHS.UK
    • Unforgettable Experiences enables artistic and creative sessions for people with neurological conditions or dementia
    • Dementia Adventure provide supported group holidays for people living with or caring for someone with dementia. They can arrange your travel, accommodation, activities and meals. You can choose a holiday that suits your needs, such as relax by the coast, walk in the mountains, or explore historic sites.

    Last updated: April 19, 2024