Staying independent with dementia
If you have a dementia, 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 can vary. With the right support, many people live independently for several years.
Living at home when you have dementia
In the early stages of dementia, many people can 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
- information about local support and services that you may find helpful
As the illness gets worse, it is likely that you will find it harder 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 your Health and Social Care (HSC) Trust.
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.
How technology can help you at home
There are products and services to help those with dementia or other long-term conditions live independently and safely. This is also known as assistive technology.
Monitoring systems (telecare)
Monitoring systems, also known as telecare, can help to keep you safe. They include devices, such as:
- portable alarms or fixed position alarms – when activated these make a high-pitched sound or send an alert to a family member's pager or phone
- movement sensors – to detect, for instance, when someone has fallen out of bed
- smoke alarms and carbon monoxide detectors
- sensors or detectors that automatically send a signal to a family member, carer or monitoring centre by phone
Daily living aids
Daily living aids can help with day-to-day tasks, such as:
- clocks showing the day and date as well as the time
- reminder devices, such as pill dispensers, which prompt you to take medicine at the right time, 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
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
- 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 answer 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 jobs and benefits office. If you decide to leave work, get 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
Your employer has to make reasonable adjustments in the workplace to help you do your job.
Driving
If you've been diagnosed with dementia, you must tell DVA and your car insurance company.
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 DVA will ask for medical reports and possibly a special driving assessment to decide whether you can continue driving.
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 Power of Attorney
- making an Advanced Care Plan– this covers the treatment and 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