There are around seven million carers in the UK, which is around one in every 10 people. And 11% of them are caring for someone with dementia (data from CarersTrust).
There are several types of dementia, and those with a diagnosis can experience symptoms including memory loss, confusion and difficulties with concentration and language.
It develops when there is damage to the brain, caused by diseases such as Alzheimer’s or brain events, such as a stroke. Those with dementia can continue to have an active and fulfilling life, but will need support as the disease progresses.
Family members can, and often do, start to care for their loved one after their dementia diagnosis. It’s preferable for carers to be involved from the moment their loved one is diagnosed, so they can play an active role in shaping their care and treatment from the start.
It’s important that families are informed about the type of dementia and the symptoms associated with it as early as possible, so they know what level of care is likely to be required and how the disease will progress, and understand and best manage the condition.
Family members can supplement the care their loved one receives from professionals, such as professional home carers or nurses. But in many cases they are the only caregivers, especially in the early stages after a dementia diagnosis.
Becoming a carer
These are some of steps you should take if you decide to care for a family member:
Apply for a carer’s assessment: You should speak to your GP, and apply for a carer’s assessment. This is free, and includes respite care, information on local support groups, help and equipment.
Set up a lasting power of attorney, which will ensure that if the person with dementia loses capacity, their affairs can be looked after by you as their carer. Remember that a lasting power of attorney needs to be set up while the person with dementia is still capable of making decisions for themselves, and needs to be registered with the Office of the Public Guardian before it can be used. Solicitors can support you through this process, if needed.
Check if you are eligible for financial support. Carers can claim benefits if they spend at least 35 hours a week caring for their family member, are over the age of 16, aren’t studying for more than 21 hours a week and earn under a certain amount. Find out more about carer’s allowance, and download our free Funding Care Guide for more information about how to pay for your loved one’s care.
Caring for your loved one
You may need to read up on how to care for your loved one’s specific symptoms. It’s important to understand how dementia develops, to help you prepare, although everyone experiences symptoms differently.
People in the early and middle stages of dementia often have problems communicating, and continuing to communicate with them is very important. This means including them in conversations, and making sure they’re not alone or feel isolated. Also avoid telling the person if they’re repeating the same things.
To help manage memory loss symptoms, you may want to make sure their home has a calendar and visual reminders, such as helpful notes around the home if needed. Make sure important objects are in obvious places, such as keys near the door, and that your loved ones are eating and drinking regularly.
Sometimes, people with dementia can experience delusions, and when this happens it’s important to not immediately dismiss what they’re saying, or to get frustrated. Instead, offer reassurance.
There is a lot to consider when becoming a carer. It’s important to keep on top of the person’s medication, and ensure they are getting regular exercise and a healthy diet. You may need to adapt, but it’s important to ensure your loved one isn’t isolated from the outside world, and can still enjoy outings to their favourite places and socialising with friends and family.
Looking after yourself as a carer
There are many positives to caring for a loved one with dementia. You can gain new skills and build on your relationship with the family member you’re caring for, and feel the satisfaction of helping someone you love. But there are also challenges.
One of the most important duties a carer has is to take care of themselves, but it can also be one of the hardest. Many carers also have jobs and other family responsibilities on top of their caring duties.
Caring can be physically and mentally exhausting, and can lead to caregiver stress and other mental health issues. Often, carers have to manage the interests and expectations of several parties, including other family members, and sometimes their responsibilities and priorities can overlap.
This is why it’s important to take breaks when you need to, as well as prioritise tasks and be realistic as to how much you can achieve in one day. On a day-to-day basis, it’s important the carer makes time for themselves, continues with hobbies and interests and gets enough sleep, exercise, and a balanced diet. Read our blog on carers’ wellbeing for more information.
Carers can, and should, take respite when they feel they need to. Remember that family and friends are there to step in when needed, and many charities offer short breaks for carers, whether that’s for an hour, an afternoon, or a weekend. It’s advised to build up a network of support around you, including local authority support and social services. The GP should be your first port of call if anything arises.
Caring for someone with later stage dementia
As the person’s dementia progresses, their abilities and needs will change, and carers will need to adapt. Carers may find they need more support, and might reach a point when they no longer feel able to provide care. It’s good to think about this in advance – this is known as advance care planning.
You can contact your local social care or care service to discuss arranging other types of care support for their family member. The person with dementia may eventually be more suited to other care options, including home care, a residential care home or nursing home, or sheltered housing. You can find out more about the range of home care options available by downloading our Elderly Care Guide.
For advice and support on becoming a family carer, arranging more support, or for advice on looking after yourself as a carer, there are several charities and organisations that can help, including Alzheimer’s Society, Age UK and Carers UK.
For a detailed overview on all things regarding dementia, download our free Guide to Living Well With Dementia.