Support after receiving a diagnosis is very important. If you have recently been diagnosed with Dementia, this page is for you.
Don't worry if you feel overwhelmed or are unsure of what is right for you immediately after a diagnosis this is common and there is support available to help.
Things to consider after a diagnosis:
- Emotions & Relationships
- Treatments & Ways To Stay Active & Healthy
- Financial Matters & Planning Ahead
- Your Job – If You’re Still Working
- Driving
- Practical & Emotional Support – From NHS, Social Services, Private Companies Or Voluntary Organisations.
You won’t need to think about all these things straightaway, so take it at your own pace.
The dementia guide: Living well after your diagnosis
Have you recently been diagnosed with dementia? Get your copy of the latest version of our dementia guide. It has lots of tips and advice to help you live well with dementia and keeping doing the activities that you enjoy.
The dementia guide includes sections on:
- About dementia
- Treatments
- Living well
- Planning ahead
- Services for people with dementia
- Research
- Alzheimer’s Society support services
- Other useful organisations
Visit the following page to download the latest guide:
The dementia guide: Living well after your diagnosis | Alzheimer's Society
How is Dementia Diagnosed?
Often a GP will make an initial assessment then refer a person to a memory clinic or other specialist services for a more detailed assessment. A specialist doctor will have more expertise in dementia and will be able to arrange more detailed tests and brain scans, if needed.
Tests for dementia can vary and you may find that a doctor or specialist will ask a loved one or someone who knows you very well to describe the problems you have developed or list how these problems are affecting your day-to-day life.
Your doctor may send you for tests or physical examinations this may be a blood test in order to exclude other health problems before diagnosing you.
Other tests may involve going for a brain scan or memory tests (which will take place at a specialist clinic).
Click here (opens in new tab) to read more about the NHS Diagnosis process
Advance Care Planning
Do you have a diagnosis of dementia?
Have you heard of Advance Care Planning?
Advance Care Planning is thinking about your wishes and priorities for yourself and your care. This can help to support you now and, in the future, if you are no longer able to make those decisions yourself.
It is about living for today, and planning for tomorrow
And can help to answer the question, who will speak for you if you can’t make your own health and care decisions?
Advance Care Planning is different for everyone.
It can include putting in place:
- A record of your care preferences
- A Lasting Power of Attorney
- A record of your likes and dislikes
You might also want to consider having conversations about a ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) form or an Advance Decision to Refuse Treatment.
It is important to share and discuss this information with people you trust to speak on your behalf, and people who are, or will be, involved in your care.
The Dementia Wellbeing Service is a service from the Alzheimer’s Society which can offer support
Telephone: 0333 150 3456
Email: DementiaSupportLine@alzheimers.org.uk
Website: Click here (opens in new tab)
The Alzheimer’s Society also provides a translation service. Call the number and say the English word of the language you want.
Family & Friends
Dementia will change your relationships with people especially loved ones. It is a good idea to have conversations with those closest to you about the changes that may eventually take place. People close to you will need to offer you more support in daily life, in time they may become your 'carer'.
If you have children or grandchildren it is a good idea to tell them about your dementia.
Click here (opens in new tab) for guidance on how to explain dementia to children and young people
Your Feelings
There may be numerous feelings you are experiencing , here are some tips on how to navigate through them:
Feelings of an initial sadness or loss as a result of being diagnosed are normal. You may feel you will no longer get to do the things you love and enjoy or things that you have planned. Dementia will require changes to your lifestyle and may require total life changes but with the right support and information you will be able to carry on with regular aspects of your day routine.
Shock or disbelief or denial , are normal responses and it can take you time to deal with the realities that come with your diagnosis.
Some people may experience self blame or worry about whether you did something wrong to get dementia. It is important not to dwell on this and keep a positive outlook.
Fear is a common reaction to a diagnosis as you may be considering your future and a loss of control or feelings of becoming a burden to your family. Talking with others about this can help. It is important not to feel this way on your own and to share these feelings with someone that can be trusted
A feeling of relief, as you may feel better having an explanation for the changes for what you have been experiencing, rather than worry about what else it could be. You may feel once you have a diagnosis, you can do something about it.
You feel you may need access to some counselling support or someone to talk to click here
Financial Planning
If you are thinking about what will happen to your finances once dementia begins to take full effect, you may want to discuss this with your loved ones and bank.
Some may want to register a power of attorney (opens in new tab) , but only use this to manage more complex financial decisions.
Decisions like (changing a utility gas supplier) and other day-to-day finances for paying for something at the shop may be left for you to manage.
If you begin to struggle with the ability to remember pin codes for chip and pin cards or management of direct debits it may be good idea to put these kind of financial managements in the responsibility of someone trusted.
For further information please visit the NHS dementia and managing money page (opens in new tab)
Getting financial advice for future care costs
Your local council has a duty to help you get independent financial advice so you can plan and prepare for future care costs.
This covers a range of services, from general sources of information and advice, such as websites or telephone helplines, to tailored advice relating to specific financial products that can only be provided by a regulated financial adviser.
Some of these services may charge a fee.
Read Age UK's information on planning for future care costs (opens in new tab)
External resources
Explaining dementia to children and young people (opens in new tab)