A diagnosis of dementia can be a big shock – for the person with the condition, and their family. It can be difficult to know what to do, what decisions need to be made, who to tell, what support is available and what happens next.
There can either be a lot of information given to you at the time of diagnosis, or not very much at all. Either way, whatever is said to you at the time of diagnosis can be forgotten in this emotional and challenging time.
Our dementia specialist Admiral Nurses provide life-changing support for families affected by all forms of dementia, including Alzheimer’s disease. They work in the community, in GP practices and NHS hospitals, in Admiral Nurse clinics, and on our free Dementia Helpline. They have the time to listen and the knowledge to solve problems.
The families we work with have told us they want a simple checklist of what to ask, what to do and who to approach – so the important next steps are clearly outlined in one place, with links to more detailed information to consider later, when it’s needed.
The Dementia UK next steps checklist
This checklist has been written by dementia specialist Admiral Nurses, to help in the early days after you or your family member has received a diagnosis of dementia.
For each item on the checklist, there is a further link to additional information, as and when you need it. If you don’t have access to the internet, you can contact our Admiral Nurse Dementia Helpline for more information and support (see details below).
Checklist after a diagnosis of dementia
Ask whether there will be a follow up appointment after the diagnosis.
If yes, who will you see? How often? Who makes this appointment?
Who will be your main point of contact? Who will be responsible for coordinating subsequent care and support?
A Lasting Power of Attorney (LPA) is a legal document, nominating a person to make decisions on behalf of a person with dementia, if and when the time comes that they no longer have the capacity to make these decisions themselves. It is very important to fill in and register an LPA for both health and welfare, and property and financial affairs, while the person with dementia still has the capacity to do so.For more information on applying for an LPA, see our leaflet here.
For more information on capacity, see our leaflet here.
Discuss plans and wishes for the future with your family, including:
your wishes regarding your future care
your wishes regarding your future medical treatment
your hopes about your involvement with activities
An Advance Care Plan is a document that outlines a person’s future wishes for their care and medical treatment. Please see the resource for creating an Advance Care Plan here.
Apply for a Carers’ Assessment
Anyone with caring responsibilities for a person with dementia is entitled to a Carers’ Assessment, to be carried out by their Local Authority. The Assessment will look at the impact that caring for a person with dementia is having, and will then identify the type and level of support that is needed. This could include some care for the person with dementia, some training or some help coming in to the home. You will need to request the Assessment from your Local Authority. For more information on how to do this and the Assessment itself, please see our leaflet on the Carers’ Assessment.
Apply for all of the relevant financial support you are entitled to
People with dementia and their family carers are entitled to various benefits, tax discounts or financial support. It is important to make sure you are receiving all of the financial help you are entitled to. Understanding these and applying can be confusing, so please contact the Admiral Nurse Dementia Helpline, if you need assistance. You might be entitled to:-
Attendance Allowance (if the person with a diagnosis is over 65 years old)
Personal Independence Payment (if the person with a diagnosis is under 65 years old)
Council Tax reduction or exemption
Direct payments and personal budgets
For more information about all of the benefits, exemptions and support you might be entitled to, please see our Sources of support leaflet.
Organise your home so it helps you live safely and independently
There are lots of simple, practical steps that can be taken to help a person with dementia to be safe and comfortable in their home. Please read our leaflet for more information.
Inform the Driver and Vehicle Licensing Agency (DVLA) and your vehicle insurance company of a diagnosis of dementia
People with a diagnosis of dementia do not automatically have to give up their driving licence – but you do need to take certain steps to make sure you are insured and abiding by the law. Please visit our website for more information.
If you are diagnosed with dementia and still working, it is very important that you tell your employer, so that steps can be taken to support you in your job, if possible.
Similarly, if you are caring for someone with dementia, telling your employer about your changing responsibilities will help you plan together, so that you can continue working and caring as effectively as possible.
Please read our leaflet on employment and young onset dementia, here.
And please see our resources here for companies with staff who are caring for somebody with dementia.
Explore what local services and support are available
Ask your GP, local authority, social worker, and other friends and family, whether there are support groups and services for people with dementia and those who care for them in your area.
Arrange sight and hearing tests, as well as dental appointments, and attend all health screening appointments you are invited to
Keeping well when you have dementia, or if you care for someone who does, is extremely important.