There’s a lot to think about when you are told you have dementia. It can suddenly make the future feel uncertain and set off deep fears whenever there are moments of confusion and forgetfulness.
However, with better understanding of the condition, its symptoms and treatments, you and your loved ones can adjust and find the right support.
It’s often thought that dementia is all about memory loss but it is actually a general term used to refer to a group of related symptoms associated with an ongoing decline of brain functioning. It is a condition where problems with memory and other types of thinking make it hard for someone to do everyday activities for themselves.
The most common types of dementia are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia. There is no cure but a whole range of medications and treatment options can help with symptoms.
Symptoms can include:
The most common type of dementia in the UK, Alzheimer’s is a specific brain disease. About two out of three people living with dementia in the UK have Alzheimer’s disease and it starts many years before symptoms show.
It can take a while to reach a diagnosis and your doctor will need to carry out tests. When you first receive a dementia diagnosis, it can be a lot to take in. Your doctor will explain options for support and treatment, which could include activities and therapies as well as medicines. They will also be able to talk about how dementia can progress and what you and your family can expect in future.
You might be feeling upset and angry and loved ones will be anxious. It’s understandable for many people to feel a real sadness and grief at the loss of the life they knew.
But help is out there. You may be given leaflets and information about the disease by medical professionals, but a good way to come to terms with a diagnosis is to speak to other people – that could be a dementia nurse or adviser at charities such as Dementia UK, Alzheimer’s Society and Alzheimer Scotland.
You might find it useful to share experiences with people who understand what you’re going through. That could be by finding a local support group, joining an online community or speaking to a qualified counsellor or psychotherapist.
Royal Voluntary Service has activity and support groups for people with dementia in Scotland, England and Wales, focused on getting people out to meet others in similar situations. This provides a support network for those with dementia, as well as their carers. Groups do activities, while cafe support groups have information and advice on everything from power of attorney to benefits. There’s also the opportunity to link up with friendly volunteers, who will spend time with the person living with dementia and give their carer a few hours to themselves.
Rachel Fox, national dementia development manager at Royal Voluntary Service, says: “It’s so important to get a diagnosis of dementia because often that can open up the support you can get. One of the biggest pieces of advice our group members would offer is to go out and meet other people living with dementia and their carers. The friendships and support networks that are formed are absolutely invaluable.
“I know it can be daunting to take that first step. But once you’re out there and you’re speaking to other people, you’re in a safe and supportive environment where people are going through very similar situations.
“It’s important to know you can still have fun and do something enjoyable. It’s about living well with dementia – it might just be a different way of living. We’ve got so many stories of people who have learned new skills and made friends, which is amazing.”
Although there are different types of dementia, they are all progressive. Symptoms might be relatively mild at first but over time they will get worse. It can be helpful to think of dementia progressing in three stages – early, middle and late.
The most important thing to remember is that you’re not alone. Doctors, dementia nurses and support groups can help with advice, information and support for you and all the family.
Eating a balanced diet and staying fit and healthy will help you feel better and will keep your muscles, joints and heart in good shape.
Spend time with family and friends, enjoy hobbies and activities. Take time to think about the help you need with day-to-day tasks. And if you live alone, identify someone who can visit regularly and be an emergency contact.
If you’re still working, you might want to reduce your hours or change to a less demanding role. If you haven’t already done so, put in place legal, financial and long-term care planning. That could mean setting up a power of attorney or preparing your will. Find out what help is available in the form of benefits or grants.
Allow a person with dementia to enjoy life as much as possible in the same way as before their diagnosis. That could be walking the dog, gardening or going shopping. As their symptoms progress, be aware that they will feel more anxious and stressed.
It’s not just the person with dementia who needs support. If you are their carer, you’ll also need help to cope with the symptoms and the changes in behaviour. Be sure to find out about eligibility for Carer’s Allowance. Never forget that your needs as a carer are as important as the person you’re caring for.
Get registered as a carer with your GP, then apply for a carer’s assessment. You might be able to get help with housework and shopping or finding someone who can take over to let you take a break. You’ll also get contacts for local carers’ support groups.
If you’re struggling to cope, don’t feel guilty, there’s plenty of help and support, whether it’s counselling or getting regular breaks.
Remember that the Priority Services Register is a free service to help people remain safe at home. Designed to support those who need a little extra help in the event of interruptions to their gas, water or electricity supply, sign up to make sure you can access the support you need to feel safe and independent in your home.
The Priority Services Register (PSR) is a free service, designed to support those who need a little extra help in the event of interruptions to their gas, water or electricity supply.
If you or someone you know has extra communication, access or safety needs, signing up to the PSR will help you to access the best possible services at all times and to feel safe and independent at home.
