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Living Well with Dementia

If you're becoming increasingly forgetful, particularly if you're over the age of 65, it may be a good idea to talk to your GP about the early signs of dementia.

As you get older, you may find that memory loss becomes a problem. It's normal for your memory to be affected by age, stress, tiredness, or certain illnesses and medications. This can be annoying if it happens occasionally, but if it's affecting your daily life or is worrying you or someone you know, you should seek help from your GP.

Find Dementia groups and services on our directory

Thanks to David Reid and colleagues at the University of Sheffield who produced the Sheffield Dementia Information Pack, which provided the basis for this information page. Find out about David’s Drawing meaning from dementia project.

What is dementia?

Dementia is a common condition. Your risk of developing dementia increases as you get older, and the condition usually occurs in people over the age of 65.

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of the brain and it’s abilities. This includes problems with:

  • memory loss
  • thinking speed
  • mental agility
  • language
  • understanding
  • judgement

People with dementia can become apathetic or uninterested in their usual activities, and have problems controlling their emotions. They may also find social situations challenging, lose interest in socialising, and aspects of their personality may change.

A person with dementia may lose empathy (understanding and compassion), they may see or hear things that other people don’t (hallucinations), or they may make false claims or statements. 

As dementia affects a person's mental abilities, they may find planning and organising difficult. Maintaining their independence may also become a problem. A person with dementia will therefore usually need help from friends or relatives, including help with decision making.

Your GP will discuss the possible causes of memory loss with you, including dementia. Other symptoms can include:

  • increasing difficulties with tasks and activities that require concentration and planning
  • depression
  • changes in personality and mood
  • periods of mental confusion
  • difficulty finding the right words

Most types of dementia can't be cured, but if it is detected early there are ways you can slow it down and maintain mental function.

The Alzheimer’s Society produce a dementia guide. The guide is for anyone who’s recently been told they have dementia. It will help you understand more about dementia and the treatments, support and services that are available. It includes information about how you can live as well as possible with dementia and about making plans for the future. It also contains helpful information for anyone taking on a caring role.

The dementia guide has recently been updated, and now includes sections on living alone, technology, coming to terms with a diagnosis, communicating and changes to relationships.

Types of dementia and their symptoms

Dementia is not a disease, but a collection of symptoms that result from damage to the brain. These symptoms can be caused by a number of conditions.

Symptoms specific to Alzheimer's disease:

The most common cause of dementia is Alzheimer's disease. Common symptoms of Alzheimer's disease and other forms of dementia include:

  • memory loss – especially problems with memory for recent events, such as forgetting messages, remembering routes or names, and asking questions repetitively
  • increasing difficulties with tasks and activities that require organisation and planning
  • becoming confused in unfamiliar environments
  • difficulty finding the right words
  • difficulty with numbers and/or handling money in shops
  • changes in personality and mood
  • depression

Read more about Alzheimer’s disease from NHS choices.

Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse only very gradually. This means you might not notice if you have them, and family and friends may not notice them or take them seriously for some time.

In dementia, the brain becomes more damaged and works less well over time. The symptoms of dementia tend to change and become more severe.

For this reason, it's important to talk to your GP sooner rather than later if you’re worried about memory problems.

The speed at which symptoms get worse, and the way that symptoms develop, depends on what's causing the dementia, as well as overall health. This means that the symptoms and experience of dementia can vary greatly from person to person.

Some people may also have more than one condition – for example, they may have Alzheimer's disease and vascular dementia at the same time.

While dementia has many symptoms that are similar whatever the cause, the different forms of dementia do have some particular symptoms.

Symptoms specific to vascular dementia:

The symptoms of vascular dementia can sometimes develop suddenly and quickly get worse, although they can also develop gradually over many months or years.

People with vascular dementia may also experience stroke-like symptoms, including muscle weakness or paralysis on one side of their body.

Read more about vascular dementia from NHS Choices.

Symptoms specific to dementia with Lewy bodies:

Dementia with Lewy bodies has many of the symptoms of Alzheimer's disease and people with the condition typically also experience:

  • periods of being alert or drowsy, or fluctuating levels of confusion 
  • visual hallucinations
  • becoming slower in their physical movements

Read more about dementia with Lewy bodies from NHS Choices.

Symptoms specific to frontotemporal dementia:

Early symptoms of frontotemporal dementia typically include changes in emotion, personality and behaviour. For example, someone with this type of dementia may become less sensitive to other people’s emotions, perhaps making them seem cold and unfeeling.

They may also lose some of their inhibitions, leading to behaviour that is out of character, such as making tactless or inappropriate comments.

Some people with frontotemporal dementia also have language problems. This may include not speaking, speaking less than usual or having problems finding the right words.

Read more about frontotemporal dementia from NHS Choices.

Symptoms in the later stages of dementia:

As dementia progresses, memory loss and difficulties with communication often become very severe. In the later stages, the person is likely to neglect their own health and require constant care and attention.

Memory symptoms in later dementia

People with advanced dementia may not recognise close family and friends, they may not remember where they live or know where they are. They may find it impossible to understand simple pieces of information, carry out basic tasks or follow instructions.

Communication problems in later dementia

It's common for people with dementia to have increasing difficulty speaking and they may eventually lose the ability to speak altogether. It's important to keep trying to communicate with them and to recognise and use other, non-verbal means of communication, such as expression, touch and gestures.

Read more about communication problems in dementia from NHS Choices.

Problems with mobility in later dementia

Many people with dementia gradually become less able to move about unaided and may appear increasingly clumsy when carrying out everyday tasks. Some people may eventually be unable to walk and may become bedbound.

Read more about mobility problems in dementia from NHS Choices.

Incontinence in later dementia

Bladder incontinence is common in the later stages of dementia and some people will also experience bowel incontinence.

Eating, appetite and weight loss in later dementia

Loss of appetite and weight loss are common in the later stages of dementia. It's important that people with dementia get help at mealtimes to ensure they eat enough.

Many people have trouble eating or swallowing and this can lead to choking, chest infections and other problems.  

Read more about eating and nutrition from NHS Choices.

Early onset dementia:

View a helpful NHS Choices video on early onset dementia

How common is dementia?

According to the Alzheimer's Society there are around 800,000 people in the UK with dementia. One in three people over 65 will develop dementia, and two-thirds of people with dementia are women.

The number of people with dementia is increasing because people are living longer. It is estimated that by 2021, the number of people with dementia in the UK will have increased to around 1 million.

Why is it useful to get a dementia diagnosis?

If you're worried about your memory, it's well worth talking to your doctor. They may be able to reassure you that you don't have dementia.

But if you do have dementia, an early diagnosis may help you get the right treatment and support in place in good time. Finding out sooner rather than later can also give friends and family valuable time to adjust, and can help them prepare for the future.

If you're worried about your memory, it's well worth talking to your doctor. They may be able to reassure you that you don't have dementia.

But if you do have dementia, an early diagnosis may help you get the right treatment and support in place in good time. Finding out sooner rather than later can also give friends and family valuable time to adjust, and can help them prepare for the future

Living well with Dementia

In the early stages, the effects of dementia are mild and many with a diagnosis lead busy, diverse and enjoyable lives. In the later stages, the whole life of the person is affected, and those close to the person are also much affected. We’re fortunate in Sheffield, however, because a lot of advice and support is available, both for those with the diagnosis and for those who care for or support a person with dementia.

People with dementia should remain as independent and active as possible and continue as many of their usual pastimes as they can. If a person with dementia can prepare a drink or snack, or can put the groceries in their place as they have always done, these tasks should not be taken over. Continuing to meet friends and relatives, is particularly important. Those who have enjoyed going on walks, trips and holidays should continue to do so. There is no reason why people shouldn’t still enjoy listening to music, singing, dancing, painting, craftwork or going for a swim. Maintaining social life makes a very important contribution to continued wellbeing.

Worsening memory problems may eventually mean that most activities outside the home have to be accompanied, but short walks independently in well-known areas should not be ruled out. Even using a neighbourhood shop is possible if the shop owner and assistants are briefed and know who to contact if there’s a problem. Encouraging people in the neighbourhood to be ‘dementia friendly’ will also help others. More ambitious trips can be undertaken with careful planning. There’s a lot to be said for arranging walks and outings with others who have dementia and their carers.

Visit the NHS choices Dementia Guide pages for more information.

You can watch this NHS Choices video on living with dementia if you’ve been newly diagnosed with dementia, you’re worried you have early signs of dementia, or you’re caring for a person with dementia.

You can join the Alzheimer’s Society online community forum Talking Point to share experiences with other people affected by dementia.

There are also a series of videos on NHS Choices where carers share their experiences of caring for loved ones with dementia and give tips and advice on a range of issues from telling other people, to looking after your own wellbeing.

Self-care and helpful tips

What is self care…and what does it mean for me?

Looking after yourself in a healthy way, whether it’s brushing your teeth, taking medicine when you’ve a cold, or doing some exercise, is really important to help to keep yourself as well as possible. If you have a long-term condition, there are extra things you may need to consider, such as making changes to your diet, different types of exercise or different types of medication you may need to take.

It’s important to stay active and do things that are important to you, such as gardening, seeing friends and family, going on holiday, or continuing to work where possible. Self-care involves looking at what you can do and want to do, rather than what you can’t do.

Living a healthy lifestyle is an important part of self-care for everyone. You can take responsibility for your own health and wellbeing, with support from the people involved in your care. When you talk to your doctor or nurse about your condition, you may want to

discuss some of the things you need to do to stay well. Some of these will be things that you do yourself, such as eating healthily, exercising, or taking your medicines at the right time.

 

There’s lots of useful information about keeping well and healthy living on the Live Well section of the NHS Choices website.

We’ve also produced a lot of information on this page about where you can go for information and advice, what groups and activities you can take part in, and where you can go for support which can help you to live independently, safe and well.

Looking after your health

It’s important to take good care of your health.

 

Having dementia should not mean that you feel ill, so always check with your

doctor if you feel unwell. This is important because any illness can make you feel more confused and forgetful.

 

  • Try to eat balanced meals
  • Try to take regular exercise
  • Enjoy the odd alcoholic drink if you want - but avoid too much alcohol, as it may make you more disoriented
  • If you’re on medication, ask your doctor to check whether it is essential, as it can sometimes increase confusion
  • Poor vision and poor hearing can make you more confused, so it’s important

to have regular eye and hearing checks

  • Painful teeth, gums or dentures can also make life more difficult. Make sure

that you have regular dental check-ups

  • If you want help to stop smoking or have trouble sleeping ask your doctor for advice
  • Notice the signs you are feeling stressed and do something you enjoy
  • Keeping your mind stimulated can also support physical health, such as reading, jigsaws, games and chess
  • Smiling actually does improve your mood

 

Factsheets are available from the Alzheimer’s Society:

You can also get lots of information from the NHS Choices Live Well pages.

 

Keeping well

Dementia can affect the whole family. It’s important for you (and your carer) if you

have one, to look after your health and wellbeing. You might want to:

  • Have a flu jab
  • Have regular health checks
  • Contact your local advice centre to check you’re receiving any benefits you’re entitled to
  • Talk to your GP about getting a ‘social prescription’. A social prescription is a referral from your GP to a local health and wellbeing organisation, which can support you to keep active and well. These organisations have Health Trainers and Health Champions who can help you find local groups and activities. They can even go with you to activities and appointments to introduce you to them.

 

Keeping socially active

Dementia can sometimes be a very isolating illness. Reducing isolation helps

improve and maintain your mood.

Doing activities that you enjoy and keeping as active as possible can help you

cope better with the effects of dementia.

 

Enjoying life

Some of your previous interests may seem too stressful or demanding. But there

will be many activities that will still give you satisfaction.

  • Try to find things that you still enjoy doing such as listening to music, knitting, playing a game, exercising or talking to a friend
  • Caring for a pet can be very satisfying and reassuring. Taking a dog for a walk is a good way of getting regular exercise
  • Conversation between large groups of people can be hard to follow, so you may prefer friends or family to visit one or two at a time
  • Try to concentrate on what you can still do, rather than worrying about what you can’t
  • Consider starting a life history book. Use a simple scrapbook or photo album to record details of your past and present life that will be helpful for anyone who may be supporting you. This is something your family and friends can help you with, and it is a great opportunity to share your history, memories and thoughts with those close to you.

 

Relationships

Dementia can affect the whole family. It’s important to have a good support network of supportive people that you trust. You may need a carer or support from relatives, family or friends. Having any long-term condition can put a strain on relationships.

Things that might help include:

  • Talking things over

You will need to discuss plans for the future with those who are closest to you and with certain professionals. If your family and friends do not already know about your diagnosis, try to tell them as soon as possible. At first, they may not want to believe you if they are very upset by the news. Try to discuss matters in a calm way.

  • It will help if you can talk about your own wishes for the future, but try not to ask people to make promises now that may be difficult for them to keep later.

You may find it helpful to write your wishes down

  • It may help if you can talk about your feelings to someone you trust outside the family

 

Relationship Advice

If dementia is putting a strain on family relationships, you might want to talk to someone from Relate. They offer advice, consultations, sex therapy, relationship counselling, workshops and support face-to-face and by phone.

Counsellors are experienced relationship experts and are specially trained to work with families to help people resolve their problems.

 

Taking care of yourself

Tips on taking care of yourself:

  • Keep any inserts from repeat prescriptions so that you remember which medication is important to take
  • Regularly check with your pharmacist or doctor to ensure you are taking the
  • right medication
  • It’s important to have a health check each year. Remind your doctor if it’s been longer than a year or you feel your health has changed
  • The free annual flu jab can reduce the risk of getting seriously ill in winter months and is available to over 65 year-olds and those with serious medical conditions. Ask your doctor for details
  • You should also contact your doctor if you haven’t had the pneumococcal vaccine, routinely offered to over 65s, and the shingles vaccine, currently given to those aged 70 and 79 year olds
  • lf you have had a fall or are at risk of falling in the future, you can be assessed for support in your own home. Contact your doctor or District Nurse to get a Falls Assessment. These are carried out by individual practices or District Nursing teams
  • Everyone has the right to continence where achievable. With proper assessment and care, incontinence may be cured, improved or made easier to live with. You can discuss this with your GP.

 

Help with your memory

The Alzheimer’s Society produce a really helpful leaflet called the ‘Memory

handbook’ - a practical guide to living with memory problems.

 

Some things that might help you with your memory:

  • Use a medication reminder box. Your pharmacist should be able to help you to get one and put your medication in the right compartments for you
  • Using a diary or calendar
  • Using a noticeboard
  • Using sticky notes and reminders
  • Stick notes on the inside of doors reminding you to take your keys
  • Make lists and tick off tasks you complete
  • Labelling cupboard doors and room doors to remind you where things are
  • Using stronger light bulbs or task lamps to improve lighting
  • Using coloured drinking glasses, placemats and coasters to improve contrast
  • Keep things in the same place, especially things you use all the time such as keys or glasses, and have a routine
  • Keep helpful phone numbers by the telephone where you can see them
  • Displaying a timetable of your usual routine
  • Breaking information into smaller chunks can help you remember more easily. For example it might be easier to remember phone numbers like this, as it’s always easier to do once someone has shown you how
  • Using pictures to help remember. Photos can be used as promptsIf you lose something imagine yourself putting it down
  • If you can’t remember why you went upstairs, picture yourself where you were when you decided to go upstairs. Retracing your footsteps mentally or physically can help retrace your train of thought
  • If you can’t remember a recipe try picturing yourself cooking it and adding all the ingredients
  • Smells, tastes and music can all prompt memories

Dementia Cafés, Singing for the Brain and lots of other support

First contacts can be made at dementia cafes and day centres in Sheffield. They’re great places to relax, reminisce, exchange views and get informed advice in an informal way. Even if you’ve never been a ‘club joiner’, it’s worth going along to one to see if it suits.

Dementia Cafes:

For those who have not heard of dementia cafes or memory cafes, watch a short introductory video on the NHS Choices website.

Find local Dementia Cafés.

Singing for the brain:

Watch a group of people with dementia or memory loss and their carers talk about the benefits of Singing for the Brain on an NHS Choices video. We have a local Singing for the Brain group in Sheffield.

Sporting memories:

Some libraries run Sporting Memories groups.

Peer Support:

Find local Peer Support groups for people with dementia and their carers.

JABADAO is a creative communication group held at Parson Cross Forum, 56 Margetson Crescent. Tel: (0114) 327 9727.

This community activity is specifically aimed at people with dementia and their carers. Run by a coordinator and a team of volunteers the group is an hour of fun and laughter, using movement and music as the shared language. Both standing, but mostly seated in chairs, lots of props are used to enable everyone to join in.

Lunch clubs:

Some lunch clubs for older people in Sheffield welcome people with memory problems or dementia. There are lunch clubs right across the city. Most take place one day a week, a few are more frequent.

The charge varies in the range £1.50 to £4.50. Some offer transport to or from the centre. A few cater particularly to older people from black or minority ethnic groups. All lunch clubs will take people with a diagnosis of dementia as long as the lunch club doesn’t have to provide supervision or support with personal care needs.

Libraries:

For those who don’t have a computer or Internet access, remember that your local library and the mobile libraries provide free computer and Internet access.

Libraries also have a Books on Prescription service, where you can borrow books on dementia.

If you enjoy reading but have problems accessing your local library – then why

not let the library come to you. The Home Library Service offers a selection

of books, talking books, DVDs, music CDs and jigsaws, all delivered free to

your home.

 

Alzheimer’s Society:

There’s also information on groups and services available for people with dementia and their carers on the Alzheimer’s Society website, along with a host of information and advice and their online Talking Point forum.

Age UK Sheffield:

Age UK Sheffield provides a full range of services to the over-50’s. These range from free information and advice, and home independence visits, to paid-for At Home services and Wellbeing Centre places for people with memory loss.

The home independence visits can help you with things like: benefits checks, cancer support, support if you have a health condition which is jeopardising your independence, support if you’re a veteran and housing support (click the ‘free home independence visits’ link below to find out more).

You can also buy insurance services and mobility products that have been vetted by Age UK.

Age UK information and advice service

Age UK free home independence visits

Age UK At Home services

Age UK Wellbeing Centre

Age UK products and services

Day care:

Find local Day Care services.

Support for you if you care for someone with dementia

Sheffield Carers Centre provide a range of services for carers including:

  • A carers cafe held in the city centre. This is an opportunity to meet other carers in an informal environment, alongside a cup of coffee and a piece of cake.  All carers are warmly encouraged to come, and you’re also very welcome to bring the person you care for.  The event is supported by volunteers who are available to chat to you or to the person you care for, enabling you to talk to other carers.
  • Support and information sessions.
  • Drop-in advice sessions.
  • Legal advice service.
  • In safe hands service - is a scheme which helps you to create an emergency plan, with arrangements which can be quickly put in place for the person you care for if for any unexpected reason, you are unable to provide care yourself.
  • Time for me – carer break service.
  • Counselling service.
  • Telephone befriending for carers.
  • Carers employment support.
  • Carers Toolbox Courses.

Find out about the Carers Card which gives access to discounts and opportunities for unpaid carers in Sheffield.

Travel and holidays

If a person with dementia has to travel alone and requires assistance, it’s important to let the transport company know in advance. Most airports and rail companies offer help to board the train or plane, and will assist with changes and connections. If the person is likely to become disorientated or distressed during the journey, it’s recommended strongly that he or she has an escort.

The Alzheimer’s Society has lots of information on travelling and going on holiday, including dementia friendly holidays and financial assistance.

The charity Revitalise offers short breaks and holidays at its own centres for people with dementia at various prices. Tel: 0303 303 0145.

Another organisation that offers trips at various prices for small groups and couples affected by dementia is Dementia Adventure, a Community Interest Company. Their focus is on action-packed breaks, and connecting with nature in a fun and fulfilling way. Email: info@dementiaadventure.co.uk Tel:01245 237548. 

Driving

A diagnosis of dementia doesn’t result in the automatic withdrawal of the person’s driving licence. What matters, legally and practically, is whether the person is still able to drive safely. If you have the diagnosis and wish to continue to drive, the law requires that you tell the Driver and Vehicle Licensing Agency (DVLA). This is done using form CG1 or Tel 0300 790 6806 and they’ll send a copy (the line is open 8 am to 5.30 pm Mondays to Fridays, and 8 am to 1 pm on Saturdays).

If you’re unsure what answers to put down, you should discuss the form with your GP.

Fuller information is available in an Alzheimer’s Society factsheet. This runs through the factors that should be taken into account when considering whether to stop or continue driving.

If someone with a diagnosis of dementia is unsure of their ability to continue driving, they can take a driving assessment. To do this, the person applies directly to an assessment centre and pays a fee. The nearest are at St Mary’s Hospital, Leeds (tel: 0113 350 8989, Email: info@wmdlc.org) and Kingsway Hospital, Derby (tel: 01332 371929, Email: driving@derbyhospitals.nhs.uk). An assessment is not the same as a driving test. It is an overall assessment of the impact that the dementia is having on a person's driving performance and safety, and it makes some allowances for the bad habits that drivers get into.

Benefits and where to go for advice

Depending on a person’s financial circumstances, a number of social security benefits are available to those with a diagnosis of dementia and their carer. For full details visit www.gov.uk/browse/benefits/disability

  • Attendance Allowance is for people aged 65+ years who need help with personal care because of physical or mental disabilities. It’s paid at two different rates depending on the level of care required.
  • Personal Independence Payment (PIP), which replaces Disability Living Allowance (DLA), is for people aged under 65 years who need help with personal care and/or mobility. PIP is paid at different rates depending on the level of help needed.
  • For those aged less than the retirement age and who are unable to work because of illness or disability the Employment and Support Allowance (ESA) offers:
    • financial support if you’re unable to work, and personalised help so that you can work if you’re able to. You can apply for ESA if you are employed, self-employed or unemployed.
  • Help for those on low income (Income Support)
  • Help with housing costs for those on low incomes (Housing Benefit or Local Housing Allowance)
  • Carer’s Allowance is available to people who spend at least 35 hours a week caring for someone.

Make sure that you have up-to-date information on benefits. It is probably best to start by approaching one of the several organisations in Sheffield that provide advice:

Age UK Sheffield,  Citizens Advice Sheffield, Sheffield Alzheimer’s Society and Carers in Sheffield. These organisations offer further information and help with filling out the associated paperwork. 

Sensible advance planning

Accidents or becoming ill can happen to anyone at anytime. Whether or not this leads to a person going to hospital, it is sensible for everyone to carry information about any medical conditions and dietary requirements. This information is very useful for those who come to your aid and might prevent delays in decisions about the best treatment.

The Alzheimer’s Society and the Royal College of Nursing have produced a standard form for this purpose called This is me. People with a diagnosis of dementia are strongly advised to complete this form because it sets out the person’s contact details and background.

In Sheffield we have produced our own form called All about me, which you can download from this page and fill in. The All about me form provides more in-depth information about the person for health and social care professionals to use. The information in the form helps health and social care professional to see the person as an individual and deliver person-centred care that is tailored specifically to the person's needs. It can therefore help to reduce distress for the person with dementia and their carer. It can also help to overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration.

Every adult should make a will. In the same way, we should all make arrangements to protect our interests should we become unable to make our own decisions about money, property or medical treatment.

The Alzheimer’s Society’s advice is that, ‘if a person has dementia, it is important that they organise their financial and legal affairs while they are still able to do so. This ensures that in the future, their affairs will be set up in a way that they have chosen. The person may want a friend or family member to help them with this. Make sure that important papers are in order and that you know where to find them, including bank and building society statements, records of mortgage or rent, insurance policies, a will, tax and pension details and bills or guarantees’.

The Mental Capacity Act 2005 made provision for people to choose someone to manage not only their finances and property should they become incapable, but also to make health and welfare decisions on their behalf. They’re able to do this through a ‘Lasting Power of Attorney’ for personal welfare. For more information see the Alzheimer’s Society factsheet on Enduring Power of Attorney and Lasting Powers of Attorney (Lasting Power of Attorney replaced Enduring Power of Attorney on 1st Oct 2007. EPAs signed before this date are still valid).  Visit the government website which also has useful information.

You can also contact the Alzheimer’s Society local office Tel: 0114 276 8414 Email: sheffield-enquiries@alzheimers.org.uk

 Citizens Advice Sheffield offers advice on these subjects. Its service is free, confidential and independent. Trained advisers offer information and advice on many issues including benefits, housing, debt and employment. They may be able to help you resolve your problem or they may provide details of other professionals or organisations.

To speak to an adviser who will assess your advice needs, call the Adviceline on 03444 113 111 (Calls to this service cost the same as local 0114 numbers).

Further online advice on dementia

The Alzheimer’s Society has produced many ‘factsheets’ about various aspects of living with dementia. Many are available on its website, where their Dementia Guide presents the material in an easy to use format.

Supporters and family members of people with dementia might find the Dementia Carer website really useful, it’s been developed with and by family members who look after someone who has dementia. The site gives details of local clubs and groups and has useful videos where carers talk about their experiences of coping with dementia.

Assessment and treatment services

Anyone concerned about their memory problems should seek the opinion of their GP, and anyone concerned about a relative or friend’s memory should encourage them to go their GP. The GP will assess the severity of the problems and the likely causes. If they believe that the patient’s problem requires further investigation, they’ll refer them to the specialist NHS services. There are different services in Sheffield for people aged less than and more than 65 years.

The Memory Service (for over 65’s)

Sheffield Health and Social Care NHS Foundation Trust (SHSCT) is the main source of dementia assessment and treatment for people aged over 65 years. Its Memory Service aims to provide early assessment and diagnosis so that treatment and support can be initiated quickly. The service is based at the Longley Centre at the Northern General Hospital. The Memory Service carries out tests to determine whether a diagnosis of dementia (or other brain disorder) is appropriate. Not everyone who undergoes these tests receives a diagnosis of dementia. For some people given a diagnosis of dementia, there is medication that may slow the progress of the illness.

If you are diagnosed with dementia, then you might be eligible for a number of specialist and community support services and therapeutic groups. Among the services are rapid response and home treatment teams, which offer people with dementia who are experiencing difficulties a number of treatment and support options in their own homes. Some services are specifically for people who are discharged from the city’s general hospitals, and others are for people living in their own homes. Equally, if you support someone with a diagnosis of dementia, you might be eligible for one of the services run or funded by the Memory Service to meet the needs of carers.

SHSCT also provides specialist services for people with learning disabilities who are diagnosed with dementia and their carers. The Learning Disabilities Team carries out a wide range of assessments and can give a diagnosis of dementia. Anyone with a learning disability who is seriously concerned about their memory problems can consult either their GP or the Learning Disability service on 0114 226 2900.

The Neurology Memory Service (under 65’s)

The memory clinic for people of working age is run by the neurology service at the Royal Hallamshire Hospital. People with complex needs, including some older people, are referred to this service by GPs or hospital clinicians. Serious memory problems among younger people stem from various conditions and usually need specialist investigations. The neurology service carries out the appropriate tests to make a diagnosis, assess needs and arrange appropriate treatment and support.

The patients of the Neurology Memory Service are, where appropriate, assisted by various community and therapy services and support groups, some of which are provided in collaboration with the Alzheimer’s Society in Sheffield.

‘This is me’ and ‘All about me’ forms

This is me is a support tool to enable person-centred care. It’s a simple form for anyone receiving professional care who is living with dementia or is experiencing delirium or other communication difficulties. It’s suitable for use in any setting – at home, in hospital, in respite care or a care home and provides a valuable way of integrating person-centred care.

It provides an easy and practical way of recording who the person is. The form includes space to include details on the person’s cultural and family background; events, people and places from their lives; preferences, routines and their personality.

It enables health and social care professionals to see the person as an individual and deliver person-centred care that is tailored specifically to the person's needs. It can therefore help to reduce distress for the person with dementia and their carer. It can also help to overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration.

Now in its third edition, ‘This is me’ was first developed by the Northumberland Acute Care and Dementia Group and is supported by the Royal College of Nursing.

In Sheffield we’ve produced our own form called All about me, which you can download from this page and fill in. The All about me form provides more in-depth information about the person for health and social care professionals to use.

Support services

Apart from the specialist NHS treatment centres that have just been described, many other organisations offer support and advice to people with dementia, their families and carers.

These services are provided variously by voluntary non-profit organisations or charities, for-profit companies, Sheffield City Council and the NHS. Several services are funded by Sheffield City Council and/or an NHS Trust but managed by a charity, such as the Alzheimer’s Society, Age UK Sheffield and the Darnall Dementia Group. The charges vary considerably, from none to commercial rates.

See the section above - Dementia Cafés, Singing for the Brain and lots of other support to find out about local community support and support from the Alzheimer’s Society and Sheffield Age UK.

See the section on - Support for you if you care for someone with dementia for support if you’re a carer.

There are a variety of care and support services which will help people to maintain their independence and to live safe and well, including:

The City Wide Care Alarms service can provide a Care Alarm which gives instant access to help through a call monitoring centre. They can also provide a range of automated alarms to help manage specific risks in the home, such as those associated with falling or memory loss. These alarms could provide the extra help needed to make sure you, or someone you know, can stay at home for longer. A reminder service is also available.

Alarms include:

  • Smoke Detector
  • Fall Detector
  • Bed Sensor
  • Chair Sensor
  • Carbon Monoxide Detector
  • Gas Detector
  • Extreme Temperature Sensor
  • Heat Detector
  • Flood Detector
  • Property Exit Sensor
  • Epilepsy Sensor
  • Medication Dispenser

Currently the full service, including installation, maintenance, repairs and response from mobile support workers, if needed, is just £4.93 (excluding VAT) per week, or £5.50 (excluding VAT) per week to provide a service via mobile phone technology.

The Alzheimer’s Society provide a day care and home care service for people with dementia under 65 years. They recognise that every person with dementia is different and provide support to help clients participate and continue with daily living activities, hobbies and interests that are important to them

The Council also maintains a ‘Recognised Providers List’ (RPL). This enables those who are planning their support to choose providers who adhere to a clear quality framework.

Support to help you stay independent, safe and well

If you’ve read this advice page and still feel you need the Council’s help to stay independent, safe and well, then you can contact the Adult Access Team:

adultaccess@sheffield.gcsx.gov.uk

(0114) 273 4567 then press 5

 

You can also speak to the staff in our First Point reception at Howden House (in the city centre). First Point is open 8.30am to 5.30pm Monday to Friday.

Staff will talk to you about how you can be best supported to remain active, independent, safe and well. They will ask you about what you’re able to  do, and what you may need some help with.

The team will give you information and advice about organisations that may be able to help you, and identify if you only need some short-term support to help regain your independence.

Your social care worker will ask about the help you already get from family or friends and where you need a bit more help.

Access to these services is dependent on national eligibility criteria and you will be financially assessed to identify how much you’ll need to contribute towards the service cost – this process can take up to three months.

 

Housing Support

You can get housing related support to enable you to maintain your independence at home, either if you’re a tenant or own your own home. There are a range of services which aim to help promote independence and social interaction, supporting you to stay in your own home. Housing related support can include help to:

• set up and maintain your home or tenancy.

• make sure your home is safe and secure.

• manage finances and benefit claims.

• develop independent living skills and confidence.

• access health and other services.

• identify and access community groups and activities.

 

if you’re aged over 55, the following Housing support services are available

to help you:

 

North and West Sheffield: South Yorkshire Housing Association

(SYHA) Support 55
www.syha.co.uk 
support55@syha.co.uk
(0114) 290 8359

 

South East Sheffield: Age UK Sheffield
www.ageuksheffield.org.uk
enquiries@ageuksheffield.org.uk
(0114) 250 2850

 

South West Sheffield: Shelter
www.shelter.org.uk sheffield_hub@shelter.org.uk
0344 515 1515

 

Full details on all Housing Support can be found on our Housing page.

Support groups for minority ethnic groups

There is a wide range of support groups for black and minority ethnic people in Sheffield, including:

DementiaCARE training

Useful leaflets produced by Home Instead Senior Care in partnership with dementia experts as part of their DementiaCARE training programme.

http://www.homeinstead.co.uk/Useful_Information.do

Leaflets include:

  • Helping families cope
  • 10 signs of Alzheimer’s
  • What to expect
  • Sticking through Alzheimer’s
  • Managing the challenges of Alzheimer’s
  • Preserving family memories
  • Staying engaged with Alzheimer’s

Also provide free CARE online training courses to help families manage challenging behaviours like repeated questions.

They also produce a Confidence to Care book and provide free Family Dementia Workshops.

Residential Care and Short breaks

A time may come when a person with dementia would appreciate a short break from home, or when their carer needs to be away. Many residential care and nursing homes offer short stays as well as permanent residence, and most homes have considerable experience of caring for people with dementia. All homes welcome telephone calls and visits. Their charges vary considerably.

If you think you may need help to organise or pay towards the cost of a care home you can contact the Adult Access Team:

 

adultaccess@sheffield.gcsx.gov.uk

(0114) 273 4567 then press 5

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