Living with dementia
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Living with dementia impacts on the person, their family and their friends. Here we help you understand what to expect, and give advice on dealing with the changes caused by dementia.
On this page you can find information relating to:
1. General health and wellbeing with dementia
2. Living with dementia
3. Practical ways to help someone with dementia
4. Caring for a relative with dementia
General health and wellbeing with dementia
Many people can continue to live independent lives for some time following a dementia diagnosis. It’s important that the person with dementia continues to keep active and enjoying life, as this will help with both physical and mental wellbeing. This involves getting enough sleep (where possible), eating well, exercising, and socialising. Continuing to do the hobbies and activities that you and they enjoy will help, even if they have to be adapted.
Sometimes having dementia can lead to disturbed sleep. The GP can provide advice, but practical suggestions, such as preparing for sleep, can also be given by your practice nurse or adviser. If you or your relative are experiencing problems, try to avoid naps during the day, or alcohol and caffeine during the evenings. Regular bedtimes can also help with sleep patterns.
Keeping to a healthy lifestyle, such as eating well, getting lots of exercise and ensuring your relative takes care of their health and wellbeing is important, as is attending their scheduled appointments.
Living well with dementia
If your relative has been diagnosed with dementia, it is important to share your concerns about dealing with changes that may occur in the future. Often people want to help and their instinct may be to do everything for someone, or some people may not know what to do for the best. The best thing is to try to achieve a balance – being there when needed, while positively encouraging independence. You can ensure this by:
Keeping regular contact with friends and family and supporting your relative to do so: even if you can’t visit in person.
Encouraging maintenance of hobbies and social groups, although you may wish to consider sharing the diagnosis with others so they can provide more support.
Sharing your fears and anxieties or listening to your relative.
Keeping doing all the things you enjoy together with friends and family: plan days out that your relative can come on. Help with small things now and again, like cooking a meal.
Don’t take over: don’t be tempted to do everything for your relative. Staying independent for as long as possible means everyone will enjoying feeling useful and carrying on with normal tasks.
Being positive: try to focus on what your relative can do, not on what they can’t.
Use our Care services directory to find local support groups for people living with dementia.
Take each stage a step at a time, seeking advice as things change as it is likely that your relative's behaviour will change. For an insight into what may happen, see Dealing with behavioural change.
Practical ideas to help someone with dementia
As the dementia progresses there are practical things you can do to make day-to-day life easier.
Encourage keeping a diary and write down the things that need to be remembered. Keep a notepad and pen handy at all times for notes and lists.
Pin a weekly timetable to the wall containing appointments and activities.
Find ‘homes’ for specific items so that they can always be kept in the same place, and are easier to find. For example, put a bowl in the hallway for keys, or a basket in the lounge for TV remote controls.
Have a daily newspaper delivered as a prompt of the date and day.
Stick labels on cupboards or drawers to remember where everything is.
Place a list of helpful telephone numbers by the phone or on speed dial.
Get your relative a mobile phone with big buttons if they need to be supported when out and about.
Write reminders for important tasks – for example, stick a note inside the front door to remember to take their keys when they go out, or by the cooker as a reminder to check it is switched off.
Programme all-important numbers (family members, doctor’s surgery) into the phone.
Check the home has safety devices installed, such as gas detectors and smoke alarms. See also Assistive technologies for older people and memory aids for dementia in the Which? product reviews for staying independent at home.
Where possible, your relative should set up direct debits for bills so that they can’t forget to pay them.
Caring for a relative with dementia
During the early–mid stages of dementia your relative may not need constant supervision and might be able to live independently with support from family, friends and other services.
'Dad had Alzheimer's and Mum stoically looked after him.' Charlie's story
Needs assessment
Your relative can ask for a needs assessment after their diagnosis. This is a free assessment of the help and advice that they need, carried out by their local authority, though this is based on a financial assessment and some services may have to be paid for. If your relative has already had an assessment, you can ask for a review if you think that their needs have changed (see Dealing with changing care needs).
Mobility
Some forms of dementia affect a person’s mobility. If this is the case, your relative might need Mobility aids or adaptations made to their home; for more information, see Domiciliary care and Financing home alterations.
Family carers
During the early–mid stages of dementia you might care for your relative yourself, perhaps in partnership with support from social services or a private care provider. If you are involved in your relative’s care, Carers UK offers support and advice for carers, and Admiral Nurses (run by Dementia UK) offer specialist help and support for those affected by dementia. Admiral Nurses are not available right across the country, so it is worth asking if your local community has a service. See Useful organisations and websites for contact details.
Carer's allowance
If you spend more than 35 hours per week caring for your relative, you might qualify for Carer’s allowance. You should also contact the local authority and ask for a Carer’s assessment, as they might be able to provide help specifically for you in addition to the care provided for your relative. It is really important you look after yourself and get the support you need.
Dementia day care centres
There are often local day care centres that offer support to people with dementia and that your relative can attend for a few hours a week. This can be a good way to socialise, and it can also give carers a well-deserved break. If you feel that you need to take a longer break from caring, have a look at our guide to Respite care.
Explore what options are available from local charities. Additional support groups such as dementia cafés and befriending services can also be helpful. Find out what’s available in your relative’s area by asking your GP and contacting your local AGE UK or Alzheimer’s Society. Again, see Useful organisations and websites for contact details.
More information
Getting dressed and undressed: tips to help people with physical disabilities and dementia.
Activities for someone with dementia: more information about the benefits of gentle exercise and other social activities.
Cognitive exercises and mental health: how cognitive exercises and reminiscence work can help stimulate those people with dementia.
Page last reviewed: 20 May 2016
Next review due: 31 January 2018