Staying independent with dementia

Being diagnosed with dementia will have a big impact on you and your life. You and your family may worry about how long you can look after yourself, particularly if you live alone.

Everyone experiences dementia differently and the rate at which symptoms become worse varies from person to person.

But with the right support when you need it, many people live independently for several years.

Living at home when you have dementia

In the early stages of dementia, many people are able to live at home and enjoy life in the same way as before their diagnosis.

Following a dementia diagnosis, you should have been given advice on how you can keep doing what is important to you for as long as possible as well as information about local support and services that you may find helpful.

But as the illness gets worse, it is likely that you will find it more difficult to look after yourself and your home. You may then need extra help with daily activities, such as housework, shopping and adaptations to your home.

How to get extra help and support

Apply for a needs assessment from the adult social services department of your local council. This will help to identify where you might benefit from help, such as with meals or housework.

A needs assessment should be done face to face. It's a good idea to have a relative or friend with you, if you're not sure what your needs might be. They can also take notes for you.

Read more about applying for a needs assessment

Find out about dementia services near you from the Alzheimer's Society online directory. Age UK also provide a range of services and local support.

Join an online forum, such as Alzheimer's Society Dementia Support Forum. Online forums are a good way to share your experiences of living with dementia and advice on how to continue living independently.

Read more about help and support for people with dementia.

How technology can help you at home

Advances in technology mean there is now a growing range of products and services to help those with dementia or other long-term conditions live independently and safely. This is also known as assistive technology.

Telecare

Telecare systems help to keep you safe. They include devices, such as:

• portable alarms or fixed position alarms – when activated these make a high-pitched sound to alert someone
• movement sensors – to detect, for instance, when someone has fallen out of bed
• smoke and fire alarms
• telecare systems – sensors or detectors that automatically send a signal to a carer or monitoring centre by phone
• pill dispensers – release medication at appropriate intervals

If you’ve had a needs assessment, your local council may provide a telecare system. You may have to pay towards the cost of this.

Read more about personal alarms, security systems (telecare) and keysafes.

Daily living aids

These include products that help with day-to-day tasks, such as:

• clocks showing the day and date as well as the time
• reminder devices to prompt when to take medication or appointment alerts
• telephones with big buttons – these can be pre-programmed with frequently used numbers
• music players and radios with easy-to-use controls

There are several websites that sell daily living aids, such as Alzheimer’s Society online shop and Living made easy.

Smartphones and tablets

Many people with dementia find using a mobile phone or tablet helps. These devices often have a range of apps that can help people, such as an alarm clock, notes function and a reminder function.

There are also many apps specifically designed to help people with dementia – and their carers – including dedicated games, digital photobooks and reminiscence aids.

Voice-controlled virtual assistants can also help you stay independent. For example, they can remind you to take medicines and provide answers to questions about weather or train timetables.

Working when you have dementia

If you've received a dementia diagnosis, you may be worried about how you'll cope at work. You should speak to your employer as soon as you feel ready.

In some jobs, such as the armed forces, you must tell your employer. If you're unsure, check your employment contract.

You can also get advice from the disability employment adviser at your local Jobcentre Plus, your trade union or your local Citizens Advice service. If you decide to leave work, seek advice about your pensions and benefits.

If you want to continue to work, speak to your employer about what adjustments can be made to help you, such as:

• changes to your working hours
• scheduling meetings at different times
• changing to a different role that may be less demanding

Under the Equality Act 2010, your employer has to make "reasonable adjustments" in the workplace to help you do your job.

The Alzheimer's Society have more information about working and employment if you have dementia.

Driving

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

This doesn't necessarily mean you will have to stop driving immediately. Some people with dementia prefer to give up driving because they find it stressful, but others continue driving for some time as long as it's safe for them to do so

The DVLA will ask for medical reports and possibly a special driving assessment to decide whether you can continue driving.

Read the Alzheimer's Society advice on driving and dementia.

Planning ahead

You may have many years of staying independent with dementia 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.

These plans can include:

• choosing someone you trust, like a family member or friend, to act on your behalf to manage your affairs, both financial and medical – this is called 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

Read more about managing legal affairs when you have dementia.