Practical things to consider after diagnosis

Driving is often a major concern for people diagnosed with dementia. People with dementia often want to continue driving as it is an important part of maintaining independence and an active life. However, driving is a privilege and this entitlement may be withdrawn if someone has a medical condition that affects their ability to drive safely. The legal position is that a driver must be able to drive without help from anyone else, in all circumstances.

Research shows that people with dementia are more likely to be involved in accidents. This is because dementia affects those abilities required for safe driving, such as memory, reaction speed, decision-making and visuo-spatial skills.

People with dementia may be slower to react and have difficulty responding in unexpected situations. They may also have difficulty judging angles and stopping-distances.
If you are involved in an accident, even one that was not your fault, and are not able to remember the details due to memory problems, this could have significant consequences for you and others.

So, you may be able to carry on driving, but you must take the following steps when you have been diagnosed with dementia:

• Inform DVLA. If you don’t tell them, you are breaking the law and may be fined up to £1,000
• Inform your insurance company. If you don’t tell them, your insurance may be invalid. If you are involved in an accident, even if it is not your fault, and your insurance company becomes aware that you have not informed them of your diagnosis, you could be guilty of driving without valid insurance
• Check with your doctor or specialist about whether you can still drive safely. If they are not sure, they may refer you for a driving assessment.
• Take sensible steps to reduce risks, for example:
• Avoid driving when tired or ill and especially after consuming any alcohol or medication which may make you drowsy. Check with your GP if you are unsure about your medication
• Avoid driving at night or in bad weather
• Avoid driving on motorways and during rush hour
• Avoid long-distance driving, stick to routes you know well
• Give yourself plenty of time to get to your destination, don’t rush.

Knowing when to stop driving

Sometimes it’s obvious that driving is no longer a good idea. You may find that you feel less comfortable behind the wheel and changes such as road works or diversions could cause you anxiety. It isn’t always easy to know if you are still safe, but other people may be able to tell you if they have any concerns.

If you or your family or friends have concerns about your driving abilities or if you have been advised to stop driving and feel you are safe to continue, then you can contact QEF Mobility Services. They offer comprehensive driving ability assessments designed to help those who are unsure of their ability to continue to drive safely.

Alternatives to driving

Giving up your car can be a real blow, especially if you have been a driver for many years and have relied on being able to get yourself around on a day-to-day basis. There are, however, many people who do not have a car and who happily use other forms of transport. As you know it can be very expensive to run and maintain a car. In fact, if you drive 2000 miles or less a year, it may be cheaper to use a taxi instead.

If you are unable to continue driving, consider using taxis, voluntary transport, trains, Dial-a-Ride services, buses, walking, cycling or asking friends for help as alternative means of transport. You can also consider online shopping, groups, or virtual tours too.​​​

Blue badge scheme
To apply for a blue badge online: www.gov.uk/apply-blue-badge

Bus Passes
If you are over the age of 66 you will be entitled to a free bus pass. If you are over the age of 60 and your state pension status then you will be entitled to a free bus pass. You may also be eligible for a free bus pass if your driving licence has been revoked by DVLA as a result of your dementia or another medical condition. Go to your local library for details about how to claim your free bus pass. Alternatively you can call Surrey County Council on 03456 009 009.

Senior Railcards
If you are 60 or over, you are automatically eligible for a Senior Railcard that entitles you to a third off most First Class and Standard fares. The card is valid for a year. For more information, call 08457 48 49 50 or visit www.nationalrail.co.uk

Disabled Persons Railcard
Having a Disabled Persons Railcard allows you and an adult companion to travel for a third off first class or standard class fares. For more information, and to check whether you are eligible, visit www.disabledpersons-railcard.co.uk or telephone 0845 605 0525

The decision to continue working or stopping work altogether is a decision you may at some point consider

The timing of when you talk to your employer is your decision, but it is important that you check if you are required to tell them about changes to your health that could affect your safety at work or safety of others. You may consider making adaptations at work to make things easier, working flexible or part time hours, changing your role, or stopping work to work in a voluntary role instead. The financial and legal implications of stopping work also need to be considered and support can be found at: www.pathwaysthroughdementia.org

The disability law service can also be contacted on:

Tel: 0207 791 9800 email: advice@dls.org.uk 
www.dls.org.uk

Support for your employer

Its important that your employer speaks to your healthcare worker to find out if there are ways to make reasonable adjustments to your work.

Meaningful occupation

If you do have to give up work its important that you still feel valued and that you lead a productive and purposeful life. You may consider an assessment from an Occupational Therapist who can help you identify ways to continue meaningful activities and occupations.

The term ‘assistive technology’ refers to systems or equipment that help people overcome problems with everyday tasks. These devices can help by increasing independence, reducing the risk of accidents in and around the home, reducing stress on carers and improving quality of life. Examples include devices to help find lost items such as keys, reminder alarms for taking medication and calendar clocks.

Many smartphones have apps as well as built in devices that can assist you if you have young onset dementia and its worth looking at which ones could help you or going to a mobile phone shop for assistance if you are unsure.

The Living Made Easy website provides products and information on assistive technology for people with dementia.

Your local council might provide you with some assistive technology that you could rent from them via Surrey Telecare

Try to ensure that your financial and legal affairs are well organised. For example, you may want to set up direct debits or standing orders to pay all your bills. This will mean that the bills are paid automatically from your bank account each month. Then you will not need to rely on your memory to keep up to date with payments. Talk to your bank to arrange this.

Make sure all your important documents can be found easily. These might include bank and building society statements, mortgage or rent documents, insurance policies, a will, tax and pension details, bills and guarantees.

The LifeBook is a free resource from Age UK that can help you find exactly what you need without searching. It will not only help you to be more organised but could also be invaluable to a family member or a friend if they need to find important information about you in an emergency.

To get a free copy of the LifeBook call Age UK on 0345 685 1061 and quote reference ALL 721.

Financial and legal considerations

You may have to make adaptations to allow you to continue to work or may have to give up work all together which may raise ongoing financial and legal issues. These websites will give you more information than we are able to cover here:

www.dementiauk.org has an excellent section on financial and legal affairs

Pathways Through Dementia or call 0203 4055940

Its useful to discuss with an Occupational Therapist how to plan for future difficulties at work and ways to adapt working life.

It may be beneficial to consider a change in working role that is less reliant on working memory or the benefit of volunteering.

Benefits

It is important to make sure that you are receiving all the benefits you are entitled to.

These may include:

• Statutory Sick Pay
• Personal Independent Payment (PIP - helps with extra costs of disability for people aged 16-64)
• Income support
• Employment and Support Allowance
• Council Tax Discount
• Housing Benefit
• Carers allowance

For further information about what you are entitled to and how to claim contact the Benefits Advice Service on 0800 882200, or contact your local Citizens Advice.

You should consider arranging your financial and legal affairs as soon as possible, while you are still able to do so. This ensures that in the future, your affairs will be organised in the way that you have chosen.

You may want a friend or family member to help you with this. You may also need to get advice from a solicitor when completing legal documents.

Check that documents are completed correctly and are legally valid. Citizens Advice is an excellent source of information on many legal matters. Alzheimer’s Society can also give details of firms with specialist experience in legal problems arising in relation to dementia.

Lasting Power of Attorney
Lasting Power of Attorney is a legal way of appointing someone to manage your affairs if you ever become unable to make your own decisions. The person you nominate must be appointed when you are able to organise your own affairs. They can only take over when you can no longer manage on your own.

There are two different lasting powers:

• Property and Affairs - to appoint someone to look after your financial affairs
• Health and Welfare - to appoint someone to take decisions about other important issues, such as consent to medical treatment or whether to move into a home.

Lasting Power of Attorney strengthens the rights of people with dementia to make plans for their future, and gives them greater choice. It also provides a degree of protection, as well as reassurance that their wishes will be followed as far as is possible.

For more information on Lasting Power of attorney and how it can be registered online visit:
www.gov.uk

Making a will
A will ensures that when a person dies, their money and possessions go to people of their choosing.

You can make or change a will if you can show that you understand what you are doing and what the implications will be. The solicitor will judge whether you are able to make a legal will, sometimes after taking medical advice.

Trusts
If you have financial assets, such as property or savings, you can set up a trust. This ensures that the assets are managed in a way that you choose, both now and in the future. There are a number of different kinds of trusts and ways of arranging them. If you are in the early stages of dementia and want to do this, you should consult a solicitor while you are still able to convey your wishes clearly.

It is important that the trust is set up well before you need to be supported in a care home. This is because the local authority needs to be sure that the person with dementia has not set up a trust to deliberately deprive themselves of assets that could contribute towards the cost of their care.

People with dementia are entitled to a community care assessment from Social Services. This is the first step in developing a care package to meet your support needs.

To request an assessment contact your local Social Services office or talk to your health care professional.

There are some simple things that you can do to help yourself:

• Get a chain fitted to your front door and always ask to see identification before opening your door to a stranger
• Make a note on your calendar if you are expecting a tradesman and always check their identity

Consider your online security and safe computer applications which can store passwords. Courses are available at Surrey Libraries to learn more about online security.

Discuss with your telephone provider ways to minimise inappropriate calls.

Preventing falls
People who are taking more than 5 different medications are significantly more likely to have a fall in the home. There are several things you can do to help prevent this from happening.

What you can do:

• Take daily exercise, such as walking, to keep your muscles strong and joints supple
• If you use a mobility aid, make sure it is safe and that you are using it properly
• Some medication may affect your mobility. If you experience any side effects please discuss these with your GP
• Have regular eye tests. Our eyesight deteriorates with age and eye conditions such as cataracts and macular degeneration affect our vision
• Avoid poorly fitting shoes or slippers, high heels and slip-on shoes. Walking in socks, tights or stockings on non-carpeted floors can also be very slippery
• Wear well-fitting clothes and be aware of trailing belts or hemlines that could trip you up
• If you have a history of falling or are frightened of falling over, using a call alarm could help make you feel more confident that you can get help quickly
• Get up slowly from laying down or sitting. If you feel dizzy when changing position please talk to your GP

The most important advice is - do not rush! If the telephone or doorbell rings, take your time. Perhaps using a cordless handset or mobile phone could save you from rushing for calls.

Around the house

• If you have rugs or mats, please be aware that these can be a tripping hazard
• Reorganise your kitchen, bathroom and bedroom so that items you use frequently are easy to reach. This will reduce the need for you to stretch or bend
• If you need to climb, always use proper steps. Never stand on items of furniture such as tables, stools or chairs, which may be unstable
• Consider fitting a letter tray/basket to your letter-box, so you do not have to bend
• Stairs can seem daunting. Fit hand-rails on both sides of the stairs to make them safer. Do not try to carry items upstairs in your hands; keep your hands free and make sure you take your time
• Keep your home well lit
• Use non-slip rubber mats in the bath/shower. Adding hand/grab rails in bath, shower and toilet areas will help you to move more safely
• Do not leave objects in areas you use to move around your home. Be aware of trip hazards such as flexes and cables around your home
• Pets are fun but can also trip you up! It may be of help to know the whereabouts of your pet/s as you move around your home
• If you feel more advice and suggestions would be beneficial ask your GP to request an Occupational Therapy home assessment
• Your local council might provide you with some assistive technology to help with falls which you could rent from them: www.surreytelecare.com

What to do if the person you are caring for falls

• Don’t panic – the person may feel shocked and shaken, but try to stay calm
• Assess the situation – if they are hurt and unable to get up themselves, then call for assistance and wait for help
• Keep them warm by covering them with a blanket, towel or rug and try to minimise draughts as much as possible
• If they need to empty their bladder while on the floor, use a newspaper or spare item of clothing to soak up the urine.

Fire safety

• If you discover a fire in your home, leave the house and dial 999 from a neighbour’s house. Don’t try to tackle it yourself
• Make sure that all your appliances are in good working order, especially cookers and heaters
• If you smell gas, call 0800 111 999
• Avoid cooking with lots of fats or oils and don’t put anything metal in your microwave
• Make sure you have smoke alarms fitted. If you don’t have one, contact the Fire Service who will fit one for free. They can also do a free fire safety assessment of your home
• For Surrey residents the number is Surrey Fire: 0800 085 0767 and is called a safe and well visit. In Hampshire it is: 023 8062 6751 and is called a safe and well visit.

For further information ask the Alzheimer’s Society (tel: 0300 222 11 22) for their information leaflet on ‘Keeping Safe in your Home’ or contact Age UK (tel: 0800 169 2081) for advice.