Sources of Support and Advice

This booklet is for family carers of people with dementia and for people living with dementia. It may also be useful for professionals working in the field of dementia care.

What is dementia?

Dementia is a broad umbrella term that describes the progressive decline in someone’s mental ability. Symptoms of dementia could include: memory loss, changes in behaviour and personality, problems with reasoning and communication skills, and a reduced ability to carry out daily activities, such as washing and dressing. There are many different forms and causes of dementia. The most common are: Alzheimer’s disease, vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia.

About Dementia UK

Dementia UK provides specialist dementia support for families through our Admiral Nurse service. When things get challenging or difficult for people with dementia and their families, Admiral Nurses work alongside them, giving them the one-to-one support, expert guidance and practical solutions they need. The unique dementia expertise and experience an Admiral Nurse brings is a lifeline–it helps everyone in the family to live more positively with dementia in the present, and to face the challenges of tomorrow with more confidence and less fear.

We run a national Admiral Nurse Dementia Helpline. It is staffed by experienced Admiral Nurses and is for family and professional carers, people with dementia and those worried about their memory. Call 0800 888 6678 or email helpline@dementiauk.org.

What does an Admiral Nurse do?

Admiral Nurses provide the one-to-one specialist dementia support that families need:

  • if communication gets hard, we’re on hand with the skills and techniques to help families stay connected to the person they love
  • if someone with dementia is showing signs of fear or distress, we’ll work with families to find the best ways of preventing or managing this
  • if families are struggling to cope, we’ll be there to help them get their loved one the best possible care
  • if families have questions they can’t get answered, we’ll take the time to really understand the problem, and give them the support they need to tackle it.

Living with dementia can be an incredibly hard and lonely experience for both the person with dementia and their family.

This booklet contains up-to-date information to help you navigate some of the experiences dementia may present. It has practical advice covering a range of topics, including the financial support you or the person you care for might be entitled to, and equipment and assistive technology.

If you have any extra questions that aren’t answered in this information booklet, please get in touch with our Admiral Nurse Dementia Helpline.

Our Helpline is the only nurse-led dementia helpline in the UK, and offers practical, emotional and psychological support to anyone affected by dementia.

Our nurses are here to answer your calls seven days a week. Contact them on 0800 888 6678. The Helpline is free and confidential and is open from 9am to 9pm Monday to Friday, and 9am to 5pm at weekends. If you call outside of these times, please leave a message and we will return your call as soon as possible. You can also send any questions you have by email to helpline@dementiauk.org and one of our Admiral Nurses will respond.

If someone is showing symptoms associated with dementia it is important to visit a GP immediately. Some conditions might look like dementia, as they affect a person’s memory or brain function, but are treatable if addressed quickly. These include: infections; thyroid problems; delirium; vascular problems related to circulatory issues; vitamin B12 deficiency; sleep apnoea; stress; and depression.

To establish if dementia is present, a GP will take a medical and family history of the person, and will screen them for mental health and cognitive issues by asking questions and testing concentration, short term memory, mood and behaviour changes.

The GP may then request blood tests, an MRI or CT scan to examine the structure of the brain, or request a chest X-ray to check for any chest conditions.

They may also refer the person to a memory service/clinic, or to a specialist for further investigation and assessment.

If a diagnosis of dementia is given, the GP should then ensure that the person with the diagnosis and their family are made aware of any specialist advice and support services in their area, as well as referring them for further assessments and treatments that may help. This support can come from a range of organisations, including health and social care professionals, charities, and the voluntary sector.

Your dementia questions answered

What is young onset dementia?

Young onset dementia is when a person develops any type of dementia before the age of 65. Although the signs and symptoms of young onset dementia are similar to those seen in people over the age of 65 years, additionally there can be changes to mood, behaviour, personality and social behaviour. This can result in a delay in diagnosis as the symptoms are wrongly attributed to another condition such as: depression; stress; relationship difficulties; or work related issues.

The diagnosis is often unexpected and the loss of income (sometimes double as a partner may give up work to care for their family member) can be difficult to manage. The person’s children may be younger and also have to take on caring roles as the condition progresses.

Why does dementia affect each person so differently?

The brain is made up of two hemispheres and each has four lobes: frontal, temporal, parietal and occipital. Each lobe has a different function and, depending on which part is damaged by dementia, it can lead to different signs and symptoms. Therefore each person is affected differently.

Frontal lobes control emotional expression, personality, problem solving, judgement, motor function, language, motivation and social behaviour.

Temporal lobes control memory, speech, language comprehension, auditory and visual perception, emotional responses and facial recognition.

Parietal lobes control learnt skills such as reading, writing and calculations.

They also control recognition of objects, spatial awareness and the ability to perform complex skills such as driving and constructing things.

Occipital lobes control spatial processing, ability to determine between different colours, spatial awareness, colour and object recognition, and could also lead to difficulties with activities that require hand and eye coordination such as picking up items.

How can I avoid getting dementia?

You can’t avoid getting dementia but you can lower your risk of developing it.

Everything that keeps your heart healthy also keeps your brain healthy. So, eat a balanced healthy diet, don’t smoke, avoid drinking too much alcohol, and keep your cholesterol and blood pressure under control.

Stay physically active and mentally stimulated with different activities so that you use different parts of the brain. For example, walking, gardening, singing, art, music, reading, and all other hobbies and interests are thought to help.

There is no compelling research that says doing puzzles will improve brain health, however, learning another language is helpful because different parts of
the brain are stimulated and this can enhance cognitive function.

Is dementia hereditary?

Most cases of Alzheimer’s disease are not inherited and the majority of othedementias are not hereditary. There are some rarer causes of dementia that can be inherited, like Huntington’s disease. Although heredity does not appear to play a major part in older age forms of dementia, about 10% of people diagnosed with young onset dementia have a genetic form of dementia.

Why is the number of people living with dementia in the UK increasing?

People are more aware of dementia and it is now more widely acceptable to discuss the condition, so people are more likely to go to their GP to get a diagnosis. Also, people are living for longer and the risk of developing dementia gradually increases in people over the age of 65; over one in three people over the age of 90 years will develop dementia, and more people are living into their 90s.

Despite this, recent research has found that dementia could actually be on the decline, due to healthier lifestyle choices, such as: eating a healthy diet; stopping smoking; reducing alcohol intake; going for health screenings; exercising; taking part in social activities; maintaining good physical health.

Sources of Support and Advice

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