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.
Use the links below to jump to the sections in this page:
- Signs, symptoms and assessment
- Dementia and risk prevention
- Decision making with dementia
- Caring for someone with dementia
- Technology that can help
- Music and dementia
- Herbert Protocol
- Local help and support
- Dementia friendly activities and events
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)
- mood changes
- sleep disturbance and
- 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.
Diagnosis of dementia
It is important to get a diagnosis of dementia as early as possible because you and the health professional can:
- 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
- provide a person with dementia with an explanation for their symptoms, removing uncertainty and allowing them to begin to adjust
- allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)
The Mini Mental State Examination (MMSE) is the most commonly used test for problems with memory or other mental abilities. MMSE is only one part of assessment for dementia. Clinicians will consider a person’s MMSE score alongside their history, symptoms, a physical exam and the results of other tests, possibly including brain scans.
Advice and support
- NHS also has advice on what to do if you are worried that someone you know is showing signs of dementia.
- Social Care Institute for Excellence (SCIE) has produced a range of videos on dementia and caring for someone with dementia.
- Age UK has a section on symptoms and living with dementia.
- Alzheimers Society have information on symptoms and diagnosis and what is dementia.
- You can visit your GP for advice or call Alzheimer’s Society National Dementia Helpline
- The Dementia Advice Centre offers support, advice, reassurance, signposting, information, training, activities, groups and more.
- NICE and SCIE have developed a new quick guide with the aim of informing people and their family and carers about the support that is available after a diagnosis of dementia.
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.
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.
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
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.
As a carer you have rights and may be entitled to a Carer’s Allowance, which can help pay to support you as a carer and help you take a break. It’s really important that you take care of yourself too.
Newcastle Carers offer a range of services to carers including;
- carers Information Helpline for information, advice and guidance
- Regular drop in information and advice sessions
- Listening Link service – telephone support service for carers in Newcastle
- complementary therapies
- training (for carers and professionals)
- take part in events and activities
- Newcastle Carers Dementia Guide
- Silverline Memories run a regular carers support group.
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.
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.
Telecare and other equipment
There are other 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.
Items to help you if you have difficulty with mobility, continence, sight and hearing are not considered to be assistive technology, but can still improve your quality of life. Read our article on adaptations, equipment and aids for more information.
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.
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.
Dementia Advice Centre offers support, advice, reassurance, signposting, information, training, activities, groups and more.
Alzheimer’s Society Newcastle provides confidential information, advice and support services to people with dementia, their carers and professionals. Their services include:
- public information talks
- information service
- carer Information and Support Programme
- dementia Support Service – including a monthly carers group and a drop-in club.
- day Service for people with dementia
Silverline Memories run a carers support group. Search in our Events and Activities section – type ‘Silverline’ in the ‘Browse by organiser’ box.
Dementia Matters is the largest specialist dementia service provider in Newcastle. They offer a wider range of services.
Alzheimer’s Society is the UK’s leading charity for people with all forms of dementia, their families and carers. They offer support and advice on all forms of dementia and sources of help.
Dementia Friendly Gosforth is a community Facebook page that shares information which make daily living and activities easier and more accessible to people living with dementia.
Extra Care Housing
The Council now has an extra care housing scheme specifically designed for people with Dementia in Dinnington. This scheme comprises five bungalows, each with 5 bedrooms. The 24-hour support is over and above that required for the standard extra care schemes. New schemes will be opening in 2020. Contact Community Health and Social Care Direct between 8am and 5pm to arrange a care assessment.
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 well being. During Covid 19 (and perhaps at any time), there are some things we can do to make life easier to manage.
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 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, Laurel and Hardy, The Sound of Music, Wizard of Oz, West Side Story, Jungle Book, Grease and Mary Poppins.
During the coronavirus lock down perhaps you could make Music Mirrors. This is a brief life story in your own words, with sounds and music embedded to spark memories later. You can save it on your own device or their website. The words and music are easily portable to follow someone all through their journey. If they move 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.
InformationNOW has a 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.
Silverline Memories run dementia cafes, lunch groups 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.
- 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 a dementia friendly reading group for over 55’s with memory issues in Gosforth. Each session focuses on reading a short story, with breaks to talk about the plot and character development and the story. It’s free to attend and includes an opportunity to chat, have a cuppa and socialise with others in the group at the end of the 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.
Alzheimer’s Society Newcastle run a regular ‘Singing for the Brain’ class. Search in our Events and Activities section – type ‘Alzheimer’ in the ‘Browse by organiser’ box.
Silverline Memories run a monthly tea dance. Search in our Events and Activities section – type ‘Silverline’ in the ‘Browse by organiser’ box.
Life Story Work in Lockdown – a resource for carers and people with dementia during coronavirus lockdown
Games for the brain is an activity group giving people with dementia the opportunity to take part in structured activities and socialise at a number of venues.
Alzheimer’s Society Dementia Connect allows you to search for activities and groups in your area.
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.
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 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. You can find a full list of Dementia cafes in our Food and Friends article.
Information in Other Languages
Other Useful Information
- Sex and Intimate Relationships with Dementia – factsheet from Alzheimer’s Society.
- The design of homes of those with dementia or sight loss – guidelines from The Dementia Centre
- AT Dementia provides information on assistive technology that can people with dementia live more independently.
- Dementia Friends is an initiative run by the Alzheimer’s Society that offers free training sessions to the public to help people understand what it’s like to live with dementia and how you can help to make your community more dementia friendly.
- Dementia: supporting people with dementia and their carers – booklet from the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence.
- 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.
- Patient Information Centre has a range of easy to read mental health self help guides
- Living with early stage dementia and Caring for someone with dementia – Age UK factsheets
- Certificate of Vision Impairment (CVI). The CVI form asks questions if you have dementia. Patients who have learning disabilities or dementia should be certificated using the same process as for other patients. Certification serves as a formal record of a patient having a visual impairment which is of huge significance 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 receive your CVI along with an Easy Read covering letter if you requested it.
- 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.
Other Useful Websites
Last updated: January 13, 2021