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1.3 Planning helps deal with the uncertainty of the future

Knowing how the future may change with dementia can help you prepare support and care.

Some people want to know everything about dementia straight after they hear about the diagnosis, including what will happen in the future.  Some people prefer to deal with what’s happening here and now. Read this article when you feel ready to think about how to support someone with dementia as you move forward.  

It’s hard to predict how quickly dementia will progress

How slowly or quickly dementia progresses is different for each person. Age, type of dementia, treatments, physical and psychological heath conditions and lifestyle can all affect how dementia progresses. 

Sometimes dementia is described in ‘stages’ – early stage, middle stage and end stage. How quickly people move from one stage to another varies and cannot be predicted.  Find out more about progression and dementia stages.  

A healthy lifestyle might delay your dementia progression. Physical activity and resistance training, a Mediterranean diet, looking after your heart and staying socially and mentally active can reduce the risk of dementia, and also possibly progression of dementia. See  Supporting health and wellbeing.

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

Support is out there, it is how you use it that is important

Over time, many people with dementia have more trouble doing things for themselves and need more support. Find out more for the types of support you can use to help manage symptoms of dementia. You may face choices about how much support you can offer the person and how you will manage this.  

We all have different ways to cope.  This can depend on things like other responsibilities in our lives and our own health. The person you support is likely to need more support to carry out everyday tasks over time. 

While you may want to give help and support, this can become too much for one person to cope with. You may find that you can do some things for the person, but not everything.  

Some carers try to keep going without support but often find themselves stressed and overwhelmed.  

Many carers tell us that they often ‘struggle on’ out of duty or because they do not know where to turn to for support.  Getting support is as important for you as the person with dementia.  Looking after your own health and wellbeing is key to staying well and may help you to keep caring.  We suggest how friends, family and services may help you continue to help the person you support.  

Asking for help from others can be hard but it is essential for your own wellbeing.  Family and friends are often willing to help, but don’t know how to offer or what sort of support they could offer.  

Ask for help before you think you really need it. It is not admitting defeat it’s an important part of managing support.  

Find out what services are there for when you might need them.  A good place to start is the NHS Dementia guide which explains how the NHS, your local council and local charities can help .  See Plan services for support for more detail.

Your first step to accessing support is a free needs assessment which can help you to work out what your needs might be and what help may be available .

Planning for present and the future can help you feel in control 

Most families want to help the person with dementia they support to stay in their own home for as long as possible. Although there may come a time when the person is best supported by moving to a residential or nursing home; planning for both the present and the future and getting help from family, friends and services can help you to achieve this. Find out more about options for care services, equipment and care homes through the NHS website.

Some people with dementia go into a care home after a crisis. For example, a fall may lead to a hospital admission, after which doctors and family feel that the person is not safe to live at home. 

Planning ahead for a time where the person you support becomes less physically able may help prevent crises like falls. Having support services in place already which may be able to be increased may also help ensure the person is able to return home safely.  

Talking about a time when the person may need support services at home or may not be able to stay in their own home can be a very emotional and may be difficult.  However, it can be helpful to talk about these things before they happen. It can help you and the person prepare for these changes.  It can give the person with dementia the opportunity to talk about what they would like or consider acceptable and also help you to deal with feelings like worry and guilt. It can sometimes be helpful to bring others into the conversation such as other family members, your doctor or specialist nurse.  Find out more about care homes and dementia care in the Dementia Guide. 

Planning ahead also means thinking about legal, financial and medical decisions you can make to prepare for life with dementia in the future. Making plans and decisions details what you need to have in place. Thinking about what you may or may not want in the future is often called advance care planning by professionals.  Ensuring advance care plans are prepared in advance, up to date can give you peace of mind.  

Action:

Start a conversation about advanced care planning 

Find out the details of your local social services 

Most dementias do not run in families  

Many families are worried about whether dementia is hereditary or can be passed on to their children or grandchildren.  The risk of having dementia because a parent or grandparent has the disease depends on many things, including the type of dementia.  There are genetic forms of dementia. These are 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. You can find out about the different type of dementia and chances of inheriting the condition here.

There are things that all people can do toreduce their chance of dementia, and the earlier you make changes the better – but it’s never too late. Your lifestyle is important.   For example, not smoking, eating a heart-healthy diet, exercising regularly, controlling blood pressure and/or diabetes, correcting any hearing loss, keeping your brain active, and keeping connected to friends and family can all help. Read more about staying healthy in Supporting health and wellbeing.  Find out more on reducing your risk of dementia

ACTION:  Try these simple steps to help keep yourself healthy 

  • Get a health check with your practice nurse or GP 
  • Get your blood pressure checked at a local pharmacy or your GP practice 
  • Increase your physical activity e.g. aim to increase your daily step count