1.3 What may happen in the future

Read this article when you are ready

Some people want to know everything about dementia including what will happen in the future. Some people aren’t ready to think about the future. Read this article when you’re ready.

It’s hard to predict how soon or quickly dementia will progress

How slowly or quickly dementia progresses is different for each person.
Your age, type of dementia, treatments, your physical health, other health conditions and your lifestyle can all affect how dementia progresses.
Sometimes dementia is described in ‘stages’ – early stage, middle stage and end stage. Find out more about dementia stages and progression. A healthy lifestyle might delay your dementia progression, particularly if you have vascular dementia. Regular physical exercise, a Mediterranean diet, looking after your heart and staying socially and mentally active can reduce the risk of dementia, and also possibly slow the progression of dementia. See our section on Supporting health and wellbeing.

Over time your will need more support

It may be helpful to think about dementia as a condition which changes how your brain works, leading to changes in how you think, feel and what you do. It can take a long time or happen more quickly, but over time, these changes are likely to affect you more and you may need extra support to do things. Read Managing symptoms and changes for suggestions on coping with these changes.

As dementia continues to affect your brain this affects how your brain controls your body. This can lead to people with dementia having trouble with coordination and balance. Over time you may become less active and have more risk of falling. Changes in the brain can also cause incontinence (trouble controlling urine or faeces). People with dementia become increasingly frail and may have trouble swallowing or breathing towards the end of life. Often medical complications or an infection such as pneumonia are common reasons people die with dementia.

There are services and supports available when you need help.
See Alzheimer’s Society for more information on support towards end of life.
Find out more about planning for your future in Making plans and decisions.

Start your own dementia toolkit

Clicking here will open the toolkit information page where you can learn how to create your own dementia toolkit.

Some people with dementia may go into a care home

Most people want to live in their own home. Most families also want to support their person with dementia to live at home.

Unfortunately, some people with dementia have to go into a residential or nursing home because they do not have someone who can support them in their own home, or because their family and friends are not able to support them to live at home safely or provide the care that is needed.

It is not inevitable that you will go into a care home. Some treatments and supports which help people adapt to dementia can also help people stay at home longer. Many people have support at home to help with everyday tasks like shopping, cooking meals and getting washed and dressed. You can pay for these yourself or may be eligible to have them provided by your local authority. You can find out more about financial support and getting a needs assessment in Plan services to get support. Although using these services might mean you’re giving up some independence, this support may help you to stay in your own home for longer.

Some people with dementia go into a nursing home after a crisis. For example, falling leading to a visit to hospital, after which doctors and family feel that the person is not safe to live at home. However, it may be possible to plan to have support and services put in place which may help you to remain at home.

Planning for the future can help you feel in control

Some people with dementia choose to prepare for a time when their dementia gets worse and they can no longer make important decisions, about their health and care. Making plans can help you to feel better prepared for the future. Read Making plans and decisions for more information.

Most dementias do not run in families

Many people with dementia worry that dementia is hereditary and you can pass on it on to your children or grandchildren.

Most people with dementia do not have a history of dementia in their family. You can find out about the different type of dementia and chances of inheriting the condition here.

There is a small risk of inheriting a gene which may slightly increase your chances of getting dementia, but this is different to inheriting a gene which causes dementia. This is extremely rare (about 1% of all people with dementia), and people who have these genetic forms tend to get dementia younger, i.e., before the age of 65 years. Find out more about the genetics of dementia here.