Be prepared for progressive changes
Receiving a dementia diagnosis is very difficult and emotional for both the person with dementia and their family. You’ll all need time to process the news. The diagnosis does however mean that you can start to make plans about what help, information and support may be needed to carry on living as you all would wish.
If you’re diagnosed with dementia in the early stages, you should be able to carry on living independently for some time if you wish to do so: see our article on living well with dementia. But dementia is a progressive condition that will gradually develop and this differs with each person, so it makes sense to start making plans for the future. This will ensure that everything is in place for when it’s needed and help you to make choices that you feel comfortable with about your future.
Questions to ask your GP or specialist
After being diagnosed, health professionals such as a GP, dementia nurse, psychiatric nurse and occupational therapist, should arrange to see you at regular intervals to monitor any changes in your condition and discuss any concerns. The GP may work with a specialist mental health team or consultant for ongoing assessment and advise on ways to deal with specific difficulties. You may also be booked into a memory clinic, which are NHS centres that carry out more in-depth memory tests and provide support to people with dementia.
When you meet with the GP or other specialists to discuss the diagnosis, try to get as much information as possible. Asking the following questions can help you get an idea of what to expect as the condition progresses. Bear in mind that everyone's experience of dementia is different.
- What form of dementia is it?
- What is likely to happen in the future?
- What symptoms can be expected?
- How quickly is the condition likely to progress?
- Is there anything that can be done to reduce the risks or minimise symptoms?
- What help and support (such as dementia support nurses) is available locally?
- Are there any medicines that can help?
You might want to take a family member or friend with you to the appointment. They can give you support and help you make sure that you get all the information that you need.
The GP and a hospital specialist will usually jointly prescribe and monitor any drug treatment for dementia. The arrangement will depend upon your situation, where you live and what medication you’re already taking.
Dementia drugs are generally prescribed to people in the early and middle stages, but each doctor will make a case-by-case decision depending on your condition and needs. However, there is no cure for dementia and not everybody will benefit from these drugs. Make sure you ask about possible side effects before taking any new medications. The prescribing doctor, nurse or GP can offer advice.
Do some research to get support
Once the diagnosis is confirmed, you will want to find out more about what it means. Check out information from specialist charities. The following organisations have a number of useful guides and factsheets to help people affected by dementia and their families together with forums, telephone helplines and local support groups.
A charity aimed at improving the lives of people living with dementia.
A national membership charity that champions carers’ rights, connecting and supporting carers online and in local communities.
Specialist dementia support for families through the Admiral Nurse service. This isn't available right across the country, so check what provision there is where you live.
For anyone with a question or concern about dementia, call the helpline:
Mon–Fri, 9am–9pm; Sat–Sun, 9am–5pm
Young Dementia UK is a charity that exists for one reason only - to help people whose lives are affected by young onset dementia.
We attend our local dementia cafe twice a week. Dorothy recognises the people there are our friends. I meet other carers and benefit from talks about all aspects of caring and personal wellbeing. It's a relief to chat with someone who understands.
Telling those around you
Initially, you might only want to tell close family and friends. As and when you feel confident about disclosing your diagnosis and when you have come to terms with it, you might then consider telling others who the condition may have an impact on, such as neighbours or local groups you belong to. If you live in a dementia friendly community, you might feel able to share your experiences with the community. This could help develop a support network around you that works best for how you're feeling and living with your dementia.
Video story: Maureen and Mandy
When Maureen was first diagnosed with dementia, her family initially found it difficult to find the right information and support. Maureen and her daughter Mandy spoke to Which? about how they faced this daunting challenge. After lots of research and talking to others with similar experiences, the family found ways to help Maureen continue living well with dementia.
- Disability benefits: depending on the age of the claimant, Attendance Allowance (for people aged 65+) or Personal Independence Payment (PIP) (for those between 16 and pension age) might be available.
- Council tax reduction: a person with dementia may be eligible for a 25% council tax discount, worth an average of £400 per year. This applies if you live in England, Scotland and Wales and the person who is diagnosed with dementia is entitled to a disability benefit (see above). If the diagnosed person is living alone, they could be entitled to council tax exemption.
- Carer’s Allowance: if you’re looking after a person diagnosed with dementia, you may be entitled to Carer’s Allowance. This is a government benefit to help you financially if you care for someone for more than 35 hours a week.
Read more about benefits in later life in our guide to Benefits for older people.
Apply for a Blue Badge if you don’t have one already
In England, the Blue Badge disabled parking scheme has been extended to include people with hidden disabilities, which includes dementia.
In Scotland, the Blue Badge scheme now includes people with cognitive impairments. This makes it easier for people with dementia to be successful in their application for a Blue Badge.
In Wales, applicants over the age of 65 must be able to confirm they have a diagnosis of a cognitive impairment, such as Alzheimer’s or dementia.
In Northern Ireland, cognitive impairment or hidden disabilities aren’t included in the Blue Badge eligibility criteria.
Plan ahead for changing care needs
If you are diagnosed with a progressive memory problem, it’s likely that you will need an increased level of care and support in the future.
Local authorities have a duty to assess the needs of anyone they think might have a need for support, regardless of their income or financial situation. So if you (or someone you are supporting) reach a stage when coping with daily tasks is becoming difficult, it’s important to arrange a free needs assessment from your local authority. This is a vital step towards understanding your care needs and finding out what support you may be eligible to receive.
If you are keen to receive this care within your own home, read through our guide on Organising home care to find out how this could work. If you are living alone and staying in your own home starts to become difficult to manage, there are some extra care housing schemes that have been built specifically for people with dementia. These schemes provide care while allowing people to remain independent for as long as possible.
A good home for dementia patients allows them to do what they like, provided it’s not going to cause any harm.
Some forms of dementia affect a person’s mobility. If this is the case, your loved one might need a mobility aid or adaptations made to their home. Read more in our articles about home adaptations and financing home adaptations.
Organising personal affairs and care preferences
You might want to think about how others will be able to look after you in due course.
Power of Attorney
It’s a good idea to set up a Lasting Power of Attorney in England and Wales, Scotland or Northern Ireland, while you still have the capacity to make this decision. This allows you to nominate a trusted relative or friend to deal with your financial and/or health affairs as and when you lose the ability to make decisions in the future. The Power of Attorney needs to be set up beforehand, but it can only be used for decisions that the person lacks the capacity to make for themselves.
Advance decision (living will)
An advance decision to refuse treatment (often known as a ‘living will’) is a legally binding document that tells people about specific medical treatments that you do or do not want to receive in the future. This can include your preferences about life-sustaining treatments, such as using a life support machine. It will be taken into account if you lose the capacity to make decisions about your own care in the future.
In Scotland and Northern Ireland this is known as an advance directive, and different rules apply.
An advance statement sets out wishes in more general terms so that relatives know how you would like to be cared for. It can include anything that matters to you about your care, such as where you’d like to be cared for, any dietary or religious preferences, what you enjoy doing or who you’d prefer to visit you. Unlike an advance decision, an advance statement is not legally binding.
Advance care plan
An advance care plan is a document that healthcare staff may draw up, with your participation, to keep a record of your care and treatment preferences. It is not a legally binding document, but a practical one that healthcare staff can use to ensure everyone involved in your care knows about your wishes if you aren't able to explain them yourself. This would be attached to your medical notes.
If you have already created an advance statement or an advance decision, make sure these are mentioned in the advance care plan.
Social media and other digital accounts
It can be a good idea to think through how your social media accounts will be handled as your condition develops and you will want to make plans for how to share passwords, if necessary, as well as making plans for what to post in future. For the time being, though, you might find that sharing your experiences through Twitter and Facebook, for example, can be a very helpful thing to do both for yourself and for others.
Getting involved with dementia research
Dementia charities work with volunteers, both with and without dementia, to help scientists and doctors to understand dementia and test potential new treatments. If you're interested in taking part in research studies or sharing your experiences, see these charity pages:
Getting a professional dementia diagnosis will help you to get access to appropriate support and treatment.
Dementia is life changing, but it shouldn’t stop you from living an independent life for as long as possible.
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