Dealing with a diagnosis

Finding out that you have dementia can be a huge shock to you and your family and friends. You may need time to take in the information and come to terms with the news. And you’ll probably have lots of questions. Your doctor can help by explaining what having dementia may mean to you - the symptoms, how it might develop and what to expect in the future. They will discuss with you the various treatment options that are available and put you in touch with local groups and organisations who can support you with everything from social activities and advocacy services to financial and legal advice. 

As dementia is a progressive condition, it’s important that you keep in contact with your doctor and have regular check-ups to monitor how you’re getting on. You may also have further appointments with a dementia specialist to ensure that you’re receiving the best treatment.

Receiving treatment

There is no known cure for dementia, but there is a range of medication and therapies that can help with some of the symptoms. With a combination of these, lots of people can live well with dementia for many years.  Your doctor or consultant will discuss with you the best treatment options and, if appropriate, what medication you should be offered. The medication you are prescribed will depend on the type of dementia you have. For example, if you have vascular dementia which has been caused following a stroke, then you may be prescribed medication to help reduce the chance of having another stroke. Some people with dementia experience depression and anxiety and so may also be prescribed antidepressant medication.

Talking therapy

Being diagnosed with dementia can create a range of emotions. You may feel angry, confused, tearful, frightened or anxious. Talking therapies, such as cognitive behavioural therapy, can provide you with the opportunity to speak openly about your feelings. Some people find it helps them to come to terms with their diagnosis and find ways to live well with dementia.  It can also help with symptoms of depression or anxiety.  Other approaches can also help, such as reminiscence therapy, which uses photos or music to help people talk about things from the past, or cognitive stimulation, which might involve doing word puzzles or discussing current affairs. You may also wish to try a range of complementary therapies, such as aromatherapy, massage or music therapy. Talk to your GP or memory service about the different therapies that are available to you.

Little things, big difference

Often it’s the little things that can make a real difference to your life. Keeping in close contact with family and friends, or joining new groups can help prevent loneliness, maintain a quality of life and delay the progression of the condition. Sometimes, just meeting a friend for a chat, walk in the park or a game of cards can make you feel great.

Keep healthy and active

Although the symptoms of dementia will get worse over time, the rate of decline does vary from person to person. Keeping healthy and physically, mentally and socially active can help to delay the progression of the disease.

Exercising regularly, eating a balanced diet and quitting smoking can all help. Look after your general health by arranging regular check-ups with your GP, as well as regular dental, eye and hearing checks. Get the annual flu vaccine and see your GP if you feel unwell.

Keeping your body and mind active not only helps you to retain skills and memory, it can also improve your self-esteem, sleep and wellbeing. Whether it’s gardening, listening to music, playing cards, doing crosswords or going on a day trip, it can all help. 

Planning for the future with dementia

Once you have taken time to come to terms with your dementia diagnosis, then it’s important that you and your family discuss your immediate and longer term future and, wherever possible, plan ahead.

As your dementia progresses, it will become more difficult for you to make decisions. So by having conversations at this stage, it will help ensure that a positive plan is put in place and your future health, caring and financial needs are managed according to your wishes. Your GP or dementia nurse can advise you on the sort of issues to consider and put you in touch with local organisations and support groups that can help.

Adjusting your home and lifestyle

Being diagnosed with dementia does not necessarily mean that you need to make huge changes to your life immediately, however you may want to think about making small adjustments to your home. The following ideas may help you:

• Very basic memory aids can help, such as notes and reminders, clearly written and put in the place where activities are carried out, for example, reminders to check taps are turned off or to take keys when leaving the house
• It can also help to provide reminders of what things go in cupboards or drawers, for example in a kitchen or bedroom. Clearly written labels or picture labels attached to cupboard doors or drawers may be useful
• Clocks that show the time of day, including whether it is day or night time, and the day of the week, can also help someone who cannot remember these easily
• Try to keep important items, such as keys or glasses, in the same place
• Ask someone to help you assess your home to ensure it’s safe and well lit, removing any items that you may trip over
• Install carbon monoxide testers and smoke alarms
• Consider switching to automatic timers for plugs, lights and heating
• There are special medicine containers to help people take medicines at the right time. Simple pill trays with compartments for each day and time of day are helpful

With the right support, lots of people with dementia continue living at home for a long time. However, it’s important to think ahead and discuss your future caring needs and the options around where you may live in the future.  

Working

Having dementia doesn’t always mean that you have to give up work. Some people feel that working helps them to feel better physically and emotionally, while others feel that stopping work is for the best. Alternatively, you may think about cutting down your hours or changing your job. Before you decide, it’s a good idea to talk to your employer about your condition and discuss the options with them. Once your employer is aware of your condition, then they are legally obliged to try to make ‘reasonable adjustments’ so you can keep working if you’re able. If you decide to give up work and are still of working age (under 65), then you may be eligible for a range of benefits. Your GP, Citizens Advice Bureau or Jobcentre Plus can help you if you have questions around your employment.

Driving

If you have a driving licence then your must inform the Driver and Vehicle Licensing Agency (DVLA) and your car insurance company about your diagnosis as soon as possible. The DVLA will request a report from your doctor and may ask you to take a driving assessment before they decide if you are able to continue driving. Alternatively, you may decide yourself to stop driving and use other modes of transport to see family and friends.

Financial affairs

It’s important to make sure your financial and other affairs are in good order. This includes ensuring that you and your carer are receiving your entitled benefits, updating your will and setting up a Lasting Power of Attorney. This will allow someone you trust to make decisions on your behalf if you’re no longer able. To have a say in your future medical care, you can also set up an advance directive. Your GP or solicitor can advise you on this. You and your carer may be entitled to a range of benefits. Your GP or dementia nurse will be able to provide advice on this, plus you can access more information at the Citizens Advice Bureau, your local Age UK or at www.gov.uk

Can I provide the right care?

Receiving the right care and support can make a huge difference to someone with dementia.  Not only can it provide them with the social interaction and stimulation they need, but it can also help them to look after their physical and mental health so they can continue to live a full life for many years.  If your friend or relative has recently been diagnosed with dementia then you may feel daunted by what lies ahead and not know whether you can provide the right level of support.  It’s important that you share your concerns with your doctor or dementia nurse and talk through the various options available before making any decisions.

Everyone with dementia is different and the level of care and support they need will depend on their individual circumstances. It will vary according to the type of dementia they have and the stage it is at, as well as their general health and wellbeing. It will also change over time. For example, some people with mild dementia may cope well in their own home whilst some may live with a family member who does most of the caring. If things become worse, a place in a residential or nursing home may be the best option. Whatever care arrangement is put in place, it’s a good idea to review it at regular intervals with your doctor or dementia nurse to ensure that appropriate levels of care and support are being provided.

Becoming a carer

Most people with dementia are cared for in the community and often, the main carer is a family member. If you become a carer for your friend or relative, you can access a range of support from health and social care services, including home care and day care. This may include support from a district nurse, occupational therapist, social worker or mental health nurse. Your GP or dementia nurse can advise you on what support is available in your local area.

Look after yourself

Caring for someone with dementia can become a stressful experience and so it’s important that you look after your own physical and mental health and seek help if you are struggling in any way. If you feel that you need a greater level of support then talk to your GP or dementia nurse about getting the patient assessed.

From time to time, you may want to think about taking a break from caring. This may not always be easy to do, however there is support available to help you. Friends, relatives and neighbours can provide respite care at home or it can be arranged through home care agencies or, in some areas, your local authority. Alternatively, you may wish to look into options for short-term residential accommodation or short breaks for dementia patients. It’s best to talk to your GP or dementia nurse to find out what options are available to you in your area. 

Help is out there

If you or a friend or relative has been diagnosed with dementia, you can find lots of information, advice and support in your area via the following websites:

Alzheimer’s Society - www.alzheimers.org.uk

NHS - www.nhs.uk/conditions/Alzheimers-disease

Dementia UK - www.dementiauk.org

Carers Trust - www.carers.org

Carers Association - www.carersuk.org

Dementia Friends - www.dementiafriends.org.uk

You can also call the National Dementia Helpline on 0300 222 1122.