Living well with dementia
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.
As much as possible, continue to keep doing what you have always enjoyed. You may need to modify activities to within the limits of your ability, but try to live your life nearly as you always have. You may find these tips for making your house safer and more comfortable for someone with dementia useful.
Telling those around you
Dementia certainly doesn’t have to mean the end of your social life. But initially, you might only want to tell close family and friends about the diagnosis. 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.
Looking after your health
Looking after your physical and mental health is important when you have dementia. Eating healthily, exercising and getting enough sleep can make the condition more manageable. Not eating and drinking enough can lead to weight loss, constipation and urinary tract infections. And sleep is often affected by dementia, so a regular bedtime routine can help. It’s also a good idea to limit naps, caffeine and alcohol.
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.
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.
Exercise options and ideas
Being active can help to maintain your quality of life and general wellbeing. Exercising can relieve symptoms of anxiety and depression, while group activities nurture a sense of belonging and can help stop you feeling isolated.
It’s believed that mental stimulation can help slow down the progression of dementia and there are many different exercise options to explore, such as:
- tai chi
- yoga and pilates
- low-impact aerobics
- seated exercises.
Protect your mental health
A dementia diagnosis can be overwhelming and people with the condition often experience depression too. If you’re feeling low, talk to your GP who may be able to refer you for counselling or other talking treatments.
Some memory aids are fairly technical, others less so – but all are designed to help with remembering important and safety-critical everyday tasks. Read our guide to memory gadgets that help people with memory loss to stay safer and more independent.
Continuing to work
If you are still working when you are diagnosed with dementia, you might need to think about how the diagnosis could affect your ability to do certain tasks, now and in the future. If you feel your condition could have an impact on your job – particularly if your safety or that of others could be compromised – you should tell your employer as soon as possible so a risk assessment can be done.
If you know that the company has an occupational health service, approaching them first could be the best option as they will be able to assess your fitness to work, recommend adaptations and liaise with your health professional.
However, if you’re in doubt about what’s available, contact your HR department. They can tell you if the company has an in-house occupational health service, or advise on how you should proceed if they don’t have that kind of support.
If you are caring for someone with dementia and are beginning to find it difficult to work full time, find out about your rights at work.
Continuing to drive
Many people are able to continue driving for some time after a diagnosis of dementia, as long as you are safe to do so. But you must inform the DVLA (or DVLNI in Northern Ireland) and your insurance company of your diagnosis.
If you are concerned about a person with dementia’s ability to drive, chat with them about their driving and perhaps taking a driving assessment that has been specially-adapted for people with dementia. The Alzheimer’s Society has some useful information about how to organise this assessment as well as driving with dementia.
People with dementia are often eligible for a Blue Badge which provides parking concessions for those with disabilities. Read more in our articles about the Blue Badge scheme.
There are also other benefits you may be entitled to such as:
- 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.
Organising personal affairs
You might want to think about how others will be able to look after you in due course. 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.
You may find our Arranging care for dementia article a useful read.
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:
It can be difficult talking to someone with dementia. Read our useful tips to ease your way in.
Getting a professional dementia diagnosis will help you to get access to appropriate support and treatment.
We look at the different options to explore when planning dementia care.