Dementia is a group of symptoms, rather than a single disease. It refers to difficulties with thinking and memory. It is caused by damage to the brain and is typically regarded as long standing or progressive; disturbance of a number of brain functions, such as memory, thinking, language and calculation; and reduced ability to perform day-to-day activities. These changes are often small to start with, but can become severe enough to affect daily life.
The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia. A person with dementia will have cognitive symptoms (problems with thinking or memory) as well as often having changes in their mood. Dementia is progressive, which means the symptoms gradually get worse over time. How quickly dementia progresses varies greatly from person to person. As dementia progresses, the person may develop behaviours that seem unusual or out of character. The Alzheimer's Society has produced an informative factsheet that explains what dementia is and its causes and symptoms. It also looks at some of the different types of dementia. More information about the possible symptoms of each type of dementia can also be found on the NHS Choices website. On the Alzheimer's Research UK website you can also tour the brain and discover what different areas of the brain do and how they can be affected by dementia.
If you are worried you may becoming increasingly forgetful, you should visit your GP to talk about your symptoms. Your forgetfulness could be caused by a number of factors, not necessarily dementia. If you are concerned someone you know may have dementia and are unsure how to help them, you can find useful information about this by visiting the NHS Choices website. The Alzheimer's Society's top tips can also provide help with starting the conversation about your concerns with the person.
Dementia affects everyday life of the person who has it, as well as their family. If you have been diagnosed with dementia, the following information pages will help you to live well with the condition.
Research shows that social interaction with others is very important for our wellbeing. It can help to boost mood, ease stress and stimulate our brains, which may help to slow the progression of dementia.
Think about new ways to meet people and stay connected. These may include support groups, classes, day services, workshops, church, religious or spiritual groups and exercise classes. For local information see: Activities and leisure and West Sussex County Council's Specialist day services page.
This film is taken from the Social Care Institute for Excellence's website and introduces six people seeking to live well with dementia. (Please note: By playing this video you are agreeing that YouTube may set cookies on your device.)
Keep well and active
Leading a healthier lifestyle can help to keep us physically and mentally fit and reduce the chance of getting illnesses, such as heart disease and cancer. It is also important for maintaining mood and wellbeing. This factsheet produced by the Alzheimer's Society explains why keeping physically active is important for people living with dementia. It also gives examples of suitable exercises and physical activities for people in different stages of dementia.
This film from the Wellbeing Service shows how exercise and good advice are helping hundreds of West Sussex residents keep well and active. (Please note: By playing this video you are agreeing that YouTube may set cookies on your device.)
More information about achieving a healthy lifestyle, and information about activities taking place near you, can be found on:
Having dementia does not necessarily mean that you have to stop working, but once you have a diagnosis, it's probably best to tell your employer if you want to carry on working. The Alzheimer's Society has produced a useful leaflet that gives advice about how dementia can affect you at work. It also includes how to talk to your employer about your diagnosis and information about your pension and any benefits you may be entitled to.
People with dementia can often continue driving for some time, if they don't find it too stressful. But they may have to give up driving when their symptoms make it unsafe. To continue driving you must tell your insurance company and the Driver and Vehicle Licensing Agency (DVLA) that you have dementia.
You can find local information including maps and guides, concessionary travel and community and rural transport on the County Council's Getting out and about pages.
The following pages will provide information to help you understand what services are available to support you.
This service is run by Sussex Partnership NHS Foundation Trust in partnership with the Alzheimer's Society. The service provides early detection, diagnosis, treatment and care if you, or someone you care for, have problems associated with dementia as early as possible. Referral is through your GP or through health professionals in other community teams, hospital consultants and learning disability services. A leaflet giving more detailed information about the MAS can be found here.
Experiencing difficulties related to your diagnosis?
Consider getting support by having a health and social care self or supported assessment of your needs so a care plan can be drawn up. You may have to pay for all or some of the help arranged by social services, depending on your income and savings. Your carer will also be given the opportunity to complete a Carer's Assessment of their needs. To arrange an assessment, contact your GP.
You or your carer may also be entitled to financial benefits. Visit the GOV.UK website for up-to-date information.
In the early stages of dementia, many people are able to look after their homes in the same way as before their diagnosis. However, as the illness gets worse it is likely you will find it difficult to look after yourself and your home and you may need help with daily activities.
Your home can be adapted to enable you to stay safe, mobile and independent, and you can find practical advice in this section. The NHS Choices website also has some useful information about aids and equipment, including available funding.
Assistive technology refers to devices or systems that support a person to maintain or improve their independence, safety and wellbeing. More information about assistive technology and dementia can be found here.
Telecare can ensure a minor event does not turn into a crisis. When something significant happens an alarm is raised and an appropriate response is provided promptly information Telecare can be found on this section.
This can be difficult if you live alone. In West Sussex, the British Red Cross's Support at Home scheme and Home from Hospitalscheme run in partnership with Age UK Horsham District, Age UK West Sussex & Guild Care (Adur & Worthing),may be able to provide support to you when you leave hospital.
Alongside this, Age UK West Sussex provides a home visiting service.
These services are there to support you for a set amount of time only and are not ongoing.
If you live at home but find that it is becoming increasingly difficult to manage there are various care options that might make your life easier. Residential or nursing home care is one, or a different kind of accommodation may suit you better.
Information about finding care homes, and other care options, can be found by visiting the Care Guide area of the County Council's website.
An advocate is there to support you when you wish to voice your concerns about care or treatment, or represent your concerns if you feel unable to do so.
Advocates help people who are in hospital, in residential or nursing care, or who live in their own home. They do not tell you what to do or make judgments about you. Instead they help you to make choices and say what you want from services.
Staying independent - Proactive Care
A diagnosis of dementia will have a big impact on your life. You and your family may have concerns about how long you can care for yourself, particularly if you live alone. It's good to stay independent for as long as possible. People living with dementia can remain independent for some time, but will need support from family and friends.
The following video takes a look at a scheme called 'Proactive Care', which aims to help people living with complex long-term health conditions and social care needs stay in their homes, and prevent unnecessary admissions to hospital. (Please note: By playing this video you are agreeing that YouTube may set cookies on your device.)
Carers Support West Sussex - Will support the carer whether or not the person they care for has dementia. It provides specialist dementia support and carer groups. Carers Support West Sussex is a strategic partner to the County Council providing information, signposting and support via the Carer Response Line; free counselling; free therapy taster sessions; Carer Equipment Service; Carer Learning & Wellbeing programme; Carer Assessments and light touch Wellbeing Reviews. Carers have access to a Carers Health and Wellbeing Fund.
Alzheimer’s Society - Offers information and practical guidance to help people affected by dementia understand dementia, cope with day-to-day challenges and prepare for the future. They run a Carer Information and Support Programme (CrISP) which provides support and up-to-date, relevant information in a group environment, where carers can share experiences and find out about local and national services that can offer support.
This might include any video clips, current campaigns, statistics, links to external sites or other relevant pages to link to on connect to support.
This film introduces six people who are living well with dementia.
You can view a film about living at home with dementia here.
The Dementia Friends initiative aims to dispel some of the myths about dementia and improve public understanding of the condition. A Dementia Friends one-hour information session will help you to understand more about what it is like to live with dementia. Visit the Dementia Friends website to find out more and either sign up for an information session in your area or watch the video.
People with dementia have described a dementia friendly community as one that enables them to:
Dementia friendly communities are those in which people with dementia have the best possible opportunities to live well.
We hold dementia open forums and implement action plans that address the priorities and needs for that community.
Through the forums we explore how dementia-friendly local communities are by focusing on 4 key areas:
The physical environment of housing, neighbourhood shops and transport.
How carers, family, friends, neighbours, health and social care professionals and the wider business community respond to and support people living with dementia.
Are there sufficient services and facilities for people living with dementia? Are they appropriate to their needs and supportive of their varied capabilities? We challenge how well people living with dementia can use the ordinary resources of the community.
Do those that support people living with dementia communicate, collaborate and plan together sufficiently well, and make the most of people's own 'assets'.
If you would like to find out more about dementia-friendly communities in West Sussex,
Phone: 01403 213017 (Monday to Friday 10am - 4pm.)
The Dementia Guide is a helpful guide produced by the Alzheimer’s Society for anyone who has recently been told they have dementia. It can be found in different languages as well as a video version in British Sign Language.
The Alzheimer’s Society also has information on supporting lesbian, gay and bisexual people with dementia.Your Care in Sussex: Dementia and End of Life Guidance
You or your carer may also be entitled to financial benefits. Visit the GOV.UK website for up-to-date information.
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Page Reference: Dementia
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