Introduction

There are thought to be approximately 850,000 people in the UK with dementia and the condition affects 1 in 6 people over 80. Because people are living longer, the number of people with dementia is increasing and it is estimated that by 2025, around 1 million people in the UK will be affected.

Dementia is a not a normal part of getting older: increasingly forgetfulness, particularly over the age of 65, is not uncommon and memory can be temporarily affected by tiredness, stress, certain illnesses or medications. If it happens occasionally it’s not likely to be too significant, but if it's affecting normal life or is causing anxiety, it might be sensible to consult with a GP as it might be an early sign of dementia.

What is dementia?

Dementia is a syndrome (a collection of symptoms) which signals a progressive decline of brain function and many of the symptoms are related to thinking (‘cognitive problems’). Symptoms may include:

• memory problems.
• language problems.
• a decline in mental sharpness and speed of thought. 
• impaired understanding and judgement.
• altered mood and apathy.
• personality change and problems with socialising.
• hallucinations.
• difficulties carrying out normal activities and maintaining independence.

There are many different causes of dementia and everyone experiences dementia differently with different rates of progression and symptoms. The two most common are Alzheimer's disease and vascular dementia, which together make up the vast majority of cases. However, other rarer causes exist each of which may damage the brain in a different way and the exact pattern of symptoms will vary according to which part of the brain is affected.

The Symptoms of Dementia

Common EARLY symptoms of dementia, include:

• confusion about time and place.
• memory loss.
• difficulty concentrating.
• difficulty with common daily tasks.
• struggling to take part in conversations.
• mood changes.

Symptoms are often mild and may worsen only very slowly. If you're at all worried about memory problems or other symptoms you should talk to your GP.

Symptoms in the LATER stages of dementia - as dementia worsens, difficulties with thinking and communication often become severe and eventually, the person is likely to neglect themselves and require constant care and attention. Common symptoms include:

• memory problems – people may not recognise even close family and friends, or know where they are.
• communication problems – some people may eventually lose the ability to speak.
• mobility problems – many people become less able to move about unaided and may eventually become unable to walk.
• behavioural problems –may occur, including increased agitation, depression, anxiety, wandering and aggression.
• urinary incontinence is common in the later stages of dementia and may be associated with bowel incontinence.
• loss of appetite and weight are common; additionally, many people have difficulty swallowing with the risk of choking, chest infections and other problems.

Typical Symptoms of Specific Causes of Dementia

Alzheimer's disease - common symptoms include memory problems, repetitively asking the same questions, difficulty with organisation and planning, confusion in new environments, difficulty finding the right words, problems with numbers and money, anxiety and social withdrawal. Find out more about Alzheimer's disease.

Vascular dementia is the second most common cause of dementia, after Alzheimer's, and the symptoms may be similar, although memory loss may not be as prominent in the early stages. The rate of progression can vary, with symptoms sometimes coming on very quickly, but in other cases developing slowly over many months or years. Specific symptoms can include:

• stroke-like features (such as weakness or temporary paralysis on one side of the body), gait and mobility problems.
• difficulty with attention, planning and reasoning.
• depression and a tendency to become more emotional (‘emotional lability’).

Find out more about vascular dementia.

Lewy body dementia has many of the symptoms of Alzheimer's disease, but the following symptoms may be particularly prominent:

• fluctuating levels of drowsiness or confusion. 
• sleep disturbances.
• visual hallucinations.
• repeated falls and fainting.
• becoming slower in their physical movements.

Find out more about dementia with Lewy bodies.

Frontotemporal dementia - most cases are diagnosed in people aged 45-65. Early symptoms may include:

• personality changes – reduced empathy may make people seem cold and unfeeling.
• lack of social awareness – people may become disinhibited, telling inappropriate jokes or being tactless, although some people may become very withdrawn and apathetic. 
• language problems. 
• becoming obsessive – such as developing fads for unusual foods, overeating and drinking.

Find out more about frontotemporal dementia.

The Diagnosis of Dementia

There's no simple, single test for dementia. A diagnosis is based on a combination of assessments and tests which may be done by a GP or a specialist at a memory clinic or hospital.

At present there is no cure for dementia (see FAQs, below, to find out about medication and dementia). However, there are good reasons why it is important to make a diagnosis:

• if it's diagnosed early, there are practical lifestyle adjustments to maintain effective mental function.
• a diagnosis can help family and friends to make emotional and practical preparations for the future.
• to help people with dementia get the right treatment and support and lead more active, fulfilled lives.

Taking a history

An initial assessment is usually done by a GP, however if you're referred to a specialist, a more detailed history will be taken, if possible, with someone who knows you well so they can give background information and comment on changes you may not have noticed.

There will be questions about when symptoms started and whether they're affecting daily life, as well as on general health and medications as these can affect thinking.

Mental ability tests

People with symptoms of dementia are given tests known as cognitive assessments to check their mental abilities. There are several different tests, such as the ‘General Practitioner Assessment of Cognition’ (GPCOG), however, these tests alone can't diagnose dementia. Moreover, the results are not always accurate indicators of mental function and can be affected by a number of unrelated factors such as education, tiredness and anxiety, amongst others.

Most tests involve a series of pen-and-paper tests and questions, aiming to assess several different mental abilities, including:

• short- and long-term memory.
• concentration and attention span.
• language and communication skills.
• awareness of time and place (orientation).

Blood tests to check for other conditions

To exclude a treatable cause for confusion, a number of blood tests are likely to be checked, including:

• liver function.
• kidney function.
• thyroid function.
• haemoglobin A1c (to check for diabetes).
• vitamin B12 and folate levels.

If your doctor thinks you may have an infection, they may also ask you to do a urine test or other investigations.

Brain Scans and Dementia

Brain scans are often used for diagnosing dementia once the simpler tests have ruled out other problems.

Even if a brain scan looks normal, it doesn't rule out a diagnosis of dementia. Not everyone will need a brain scan and on their own, brain scans can't diagnose dementia, but form part of the wider assessment, for instance they may be used to rule out other possible cause of symptoms, such as a stroke or a brain tumour.

The most common types of scan are CT (computerised tomography) and MRI (magnetic resonance imaging). Each is based on different technology and has different advantages and disadvantages. However, in general the CT scan tends to be quicker and more convenient while the MRI provides more detailed information, but some people can find it unpleasant and, in some cases, will not be a tolerate the full scan.

Other Tests

Rarely, other tests may be arranged including a SPECT scan or a PET scan; while If a specialist is worried that epilepsy may be contributing to symptoms, an EEG may be done to record the brain's electrical signals (brain activity). However, most people won't need these types of tests.

Living with Dementia

·         Planning ahead

·         Life at home

·         Work

·         Driving

·         Telling people about your dementia

·         Stay socially active

·         Look after your general health

A diagnosis of dementia will have a big impact on your life and that of the people around you. Although your ability to deal with everyday life may be affected, with the right support at the right time, it may be possible to live independently for many years. In general, to help you to stay positive it is good to focus on the things you can still do and enjoy. However, it is also important for you and your carers to deal with the problems which may face in a realistic and practical way.

Following a diagnosis of dementia, you will be given advice on how to deal with the symptoms, as well as information about local support and services that be helpful.

Planning ahead

You may have many years of living independently ahead of you. But while you're still able to make your own decisions, it's a good idea to make plans so that your wishes for your future care can be respected. Things that may need to be considered include:

• choosing someone you trust, like a family member or friend, to act on your behalf to manage your affairs, both financial and medical – Lasting Power of Attorney
• making an advance statement – this covers the care you'd like to receive in the later stages of dementia, including where you would like to be cared for
• making a will – if you haven't done so already

Find out more about dementia and legal issues

 Life at home

At first, many people are able to carry on with life at home in much the same way as before. However, as the illness gets worse, it is likely that you will find it more difficult to cope at home without extra help with daily activities, such as housework, shopping and cooking. The first step is to apply for a ‘needs assessment’ which will help identify what could help. (see ‘Care and Support’ below for more information).

Problems with thinking and memory loss can be distressing,  but there are practical tips that can help:

• try keep to a regular routine.
• draw up an easy-to-read weekly timetable and put it up somewhere where you’ll see it regularly.
• try to schedule activities for when you tend to function better (for example, in the mornings).
• keep your keys in one place, such as a large bowl in the hall.
• keep a list of helpful numbers by the phone (including an emergency contact).
• use a pill organiser (dosette) box to help you schedule your medicines. Your pharmacist can makeup up a single use pre-loaded box, or you can buy re-useable pill boxes to suit you needs and ask someone you know to fill it for you once a week.
• make sure your home is dementia-friendly and safe.

Work

After a diagnosis of dementia, you may be worried about whether you'll cope at work and you should talk to your employer as soon as you feel able to do so.

If you want to continue to work, under the Equality Act 2010, your employer has to make "reasonable adjustments" in the workplace to help you do your job; for example, changing  your working hours, re-scheduling meetings at different times, changing you to a different role that may be less demanding

Find out more on working and dementia.

Driving

If you've been diagnosed with dementia, you are legally required to immediately inform the DVLA and your insurance company.

Some people with dementia prefer to give up driving because they find it stressful, however, others with mild symptoms will want to continue driving.  This will usually be possible - the DVLA will ask for medical reports and possibly a special driving assessment to decide whether you can continue driving. Learn more: driving and dementia

Telling people about your dementia

When you feel ready, it's usually best to tell people you know about your diagnosis and how it’s affecting you.

Most people will be sympathetic and will want to help, however you should be aware that they may find it difficult and that some people will treat you differently than they did before. This may be because they don't fully understand dementia, so try to explain what your diagnosis means and the ways in which they can support you. If they offer to help, you could discuss practical things they could do, like driving you to a weekly activity or the shops.

Stay socially active

Try to keep in touch with people and carry on with social activities, such as going to the theatre or cinema, or being part of a walking group or choir.

Many communities are now more dementia-friendly. For instance, cinemas put on dementia-friendly screenings of films and leisure centres run dementia-friendly activities like swimming sessions.

You may also find that you lose touch with some people you knew before, which may be difficult for you, however you can also meet new people – it’s a good idea to join a local dementia-friendly group, perhaps at a memory café or community centre. You can share experiences and use tips from others who are dealing with dementia.

Find out more about dementia and relationships.

Look after your general health

It's still important to look after your general health when you have dementia and you should take sensible measures in the same way as anyone else: eat a healthily and drink plenty of fluids, exercise regularly and get enough sleep. Remember that depression is very common in dementia so talk to your GP if you need help.

See your GP if you feel unwell, as illnesses like chest or urine infections can worsen confusion if not treated.

Care and Support

·         Introduction - Extra support: when, what and how

·         Needs Assessment

·         Carers Assessment

·         Care Plan

·         Care Homes

·         Admiral Nurses

Introduction - Extra support: when, what and how

A diagnosis of dementia can come as a terrible shock; however, there are sources of help and support for everyone involved.

In the early stages of dementia, you may be able to carry on with your life much as before. However, as the illness progresses, it's likely that you'll need extra help with daily activities, such as housework, shopping and cooking.

The first step is to contact social services at your local council for an assessment of the problem. There are two types of assessment:

1.       ‘Needs Assessment’ - for the person who needs care.

2.       ’Carer’s Assessment’ - for people who look after someone else.

It's advisable to do this soon after your diagnosis as an assessment can identify things you may not have been aware of.

A number of organisations and forums can be contacted for useful information as well as emotional and social support (see ‘Useful Links’ below).

Needs Assessment

If you find you need help to manage everyday tasks like dressing, washing or cooking, you should get a Needs Assessment.  First, you’ll need to contact social services at your local council and they’ll speak to you about the problems you’re having. Afterwards, they’ll write a care and support plan outlining the support they think you will need.

Ideally, this assessment should take place face to face and it's generally a good idea to have a relative or friend with you to give extra background information and to take notes for you.

If the needs assessment identifies you need extra help, you will then have a financial assessment (means test) to see how much you'll contribute to the cost of your care.

Find out more about preparing for a Needs Assessment.

Carer’s Assessment

If you care for someone with dementia, you may qualify for a Carer's Allowance from your local council.

A carer is someone who looks after a person who is ill, elderly or disabled, including family members. A carer may give emotional support, for instance by sitting with someone and talking with them, or they may help with practical tasks like:

• washing, dressing or helping with medicines.
• getting out and about and travelling to doctors' appointments.
• shopping, cleaning and laundry.
• paying bills and organising finances.
• watching over someone if they can't be left alone.

To decide whether you qualify for a Carer’s Allowance, you will need to have a Carer's Assessment, which is free and anyone over 18 can ask for one.

As part of the Carer's Assessment, someone from the council (or an organisation the council works with) will ask about what your caring role involves. They are likely to ask about how it affects your physical and mental health, work, free time and relationships. The assessment is usually face to face, but may be done over the phone or online. The assessments usually last at least an hour.

It may help if you have someone with you during the assessment. This could be the person you care for, a friend or relative. You could also use an advocate to speak up on your behalf, help you fill in forms and sit with you in meetings and assessments. They're often free.

A Carer's Assessment is separate from a Needs Assessment for the person who requires care, but you can ask to have them both done at the same time, if you wish. Useful information to have available for a Carer’s Assessment includes:

• your NHS number.
• your GP's details.
• contact details of anyone who's coming to the assessment with you.
• the name, address, date of birth and NHS number of the person you care for.
• your email address.

Find out how to get a carer's assessment.

Care Plan

Following a diagnosis of dementia, you should have a care plan. This should set out what sort of care you and people who care for you might need.

After a Needs Assessment has been carried out, a care and support plan is written up and should be sent to you within a few weeks. The Care Plan should include:

• advice on how to keep doing the things that are important to you.
• information about services that can help you and how to access them.
• any health conditions you have that need regular monitoring.
• the name of a person who will coordinate the different kinds of support you may need.

Your care plan should be reviewed at least once a year.

Care Homes

With adequate support, many people with mild-to-moderate dementia are able to stay in their own home and being in familiar surroundings can help people cope better. However, as the symptoms of dementia worsen, many people eventually require support in a care home.

Depending on their needs, this could be a residential care home or a nursing home that offers services for people with dementia. If you've been caring for a partner or relative with dementia, this can be a difficult decision to take and if you remain uncertain what to do, you may be able to arrange a trial period in a care home. If the person does move to a care home, you will still be involved in their care.

Your local council will have to carry out another needs assessment to confirm the need to go into a care home and a financial assessment to decide how much the person will have to pay towards their care home fees.

Residential and nursing homes are inspected by the Care Quality Commission (CQC). You can read their reports of care homes in England. Find out more about choosing the right care home.

Admiral Nurses

Admiral Nurses are registered nurses and experts in dementia care who work in the community, care homes, hospitals and hospices. They give practical, clinical and emotional support to families living with dementia to help them cope and to improve the quality of their lives.

Learn more about ‘What is an Admiral Nurse' and how can they help?’ (See the ‘Useful Links’ section, below, to learn how to contact an Admiral Nurse).

The Importance of Carers - Looking after Someone with Dementia

· Support for Carers

· Help that might be available following a Carer's Assessment

· Looking after yourself

· PRACTICAL ADVICE FOR CARERS

• • Everyday tasks

  • Eating and Drinking

  • Incontinence and Toileting

  • Washing and Bathing

  • Sleep Problems

Caring for someone with dementia can be difficult but resources are available to help and in the right circumstances caring can be rewarding.

Support for Carers

If you are the partner, parent or close friend of the person with dementia, you may not regard yourself as a carer, particularly in the early stages. However, as symptoms progress, you are likely to need help to cope with the changes in behaviour. It will be helpful to:

• register as a carer (talk to your GP).
• apply for a Carer's Assessment.
• check if you're eligible for benefits.

 Help that might be available following a Carer's Assessment

If you look after someone, you can have a ‘Carer's Assessment’ to see what help might be available. Possible recommendations might include:

• periods of extra help so you can take a break.
• help with shopping and housework.
• help with taxi fares if you don't drive.
• training in manual handling (safe lifting).
• help with contacting a local support group.
• advice about benefits for Carers.

A free Carer's Assessment is available to anyone over 18. Find out more about carer's assessments.

Looking after yourself

Caring for someone with dementia is difficult and it's important to remember that you need to look after yourself – in the long-run becoming anxious, exhausted or physically unwell will not help the person that you’re caring for. Try to avoid becoming isolated – maintaining an active social life is good for you and ultimately the person you’re caring for. Things that you can do that might help:

• talk to other Carers: sharing your experiences, tips and advice with others who understand what you're going through can be a great support. You can contact by attending regular carers’ groups or you could join an online forum (for instance, Carers UK forum or Alzheimer's Society Talking Point forum).
• ask for help: family and friends might be able to visit and keep you company while you’re at home or take them on outings that they enjoy.
• take a break from caring: taking regular breaks can help you to look after yourself and better support you in caring for someone with dementia. Family and friends can might be able to give you a break, even if it's for only an hour or two. Other options that might help you take a break include day centres and respite care – either in your own home or for a short break in a care home.
• counselling or another talking therapy: it’s common for Carers to struggle emotionally but they often find it difficult to talk about it. One option is to seek help from psychological therapies service – your GP should be able to advise you or you may find support available online.                                                                          

Find out more about talking therapies;    Find a psychological therapies service in your area.

Practical Advice for Carers

Everyday Tasks - in the early stages of dementia, the effects on the person’s lifestyle may not be too severe, but as symptoms worsen, the person may become stressed and scared. Helping them maintain their abilities and an active social life can help their well-being.

What you can do: let the person you are caring for help with everyday tasks, such as: laying the table, shopping, walking the dog and gardening. Memory aids, such as labels and signs on cupboards, drawers and doors, can help the person remember where things are.

As dementia affects a person’s ability to communicate, you may have to change the way you talk to and listen to them.

Read more about how to make your home dementia-friendly  or communicating with someone with dementia.                                                                           

Eating and Drinking - people with dementia may become dehydrated because they don't realise they're thirsty. This increases the risk of headaches, constipation and urinary tract infections (UTIs). These can, in turn, lead the symptoms of dementia deteriorating. Food-related problems include:

• refusing or spitting out food
• not recognizing foods
• forgetting what food and drink they like
• asking for strange food

Causes include confusion, but also physical problems such as sore gums or difficulty swallowing.

What you can do: try these tips to make meal times less stressful:

• set aside enough time for meals.
• involve the person in preparing the food.
• offer food they like in smaller portions.
• try stronger flavours or sweeter foods if that’s what they prefer.
• provide finger foods if the person finds it difficult to use cutlery.
• offer fluids in a cup that's easy to hold.

Incontinence and Toileting - people with dementia may often experience problems with both urinary incontinence and bowel incontinence which can be difficult to deal both practically and emotionally, for both the person with dementia and their carer. 

Sometimes the problem may be one of awareness or difficulty finding the toilet. However sometimes there may be a more specific cause which will need to addressed, for instance:

• Some drugs can affect bladder or bowel function.
• Bladder infections (Urinary Tract Infections - UTIs).
• Constipation, which can cause added pressure on the bladder.

What you can do: although it may be hard, try to be patient. Tips include:

• put a sign on the toilet door.
• keep the toilet door open and keep a light on at night.
• fidgeting or standing up or down may be signs that the person needs the toilet.
• inactivity can worsen constipation.
• make going to the toilet part of a regular routine.
• in some cases, waterproof bedding or incontinence pads, may helpful (see “How can we help at Fortuna?” for more details)

Read more about toileting problems

Washing and Bathing - some people may need help with washing. They become anxious about:

• the bath water being too deep.
• the noise a shower.
• a fear of falling.

What you can do: the following tips may help

• reassure the person that they won’t get hurt.
• ask them what help they want.
• use a bath seat or handheld shower.
• use the person’s preferred shampoo, shower gel or soap.
• if they don't want you to leave them alone be prepared to stay with them.

Read more about washing and bathing

Sleep Problems

Dementia can cause problems with a person's "body clock" and affect people's sleep patterns. People with dementia may get up repeatedly during the early-hours but not be aware it's night-time and hence become disorientated.

What you can do: sleep disturbance may settle over time, however in the meantime, you could try:

• putting a dementia-friendly clock, which shows whether it's night or day, by the bed.
• making sure the person has plenty physical activity during the day.
• limiting daytime naps, if possible.
• cutting out caffeine and alcohol in the evenings.
• making sure the bedroom is comfortable and has a night light.
• installing blackout blinds for the summer.

Read more about sleep problems from Alzheimer's Society