Invisible heroes: Advice for carers of people living with dementia

Living with dementia and its effects can often be isolating and many people report that they feel forgotten about, but it’s not just those diagnosed with dementia that can feel invisible, but their carers too.

Alzheimer’s Society is sharing some important information about caring for someone with dementia:

Be realistic

Remember you can only do so much. Everyone who cares for a person with dementia will need help at some stage. Focus on what you can do and try to accept that you may need help with some things.

Try not to compare yourself or your situation with other carers. You may think they are coping much better than you. However, everyone’s situation will be different and everyone faces their own challenges. You may struggle with things other people seem to find easy but they may struggle to do things that you find easy.

Set out your priorities

Many carers feel torn between their different responsibilities. You might be trying to care for the person with dementia as well as looking after a household, caring for children or going to work. As much as you may want to manage everything, it will not always be possible. It can also be difficult if other people try to help but give you advice that may not apply to your specific situation.

You can’t do everything on your own. You also won’t be able to please everyone. Work out which things you really need to do and which are less important. Look for tasks that other people may be able to help you with, to take some pressure off you. 

Remember the positives

Take strength from your commitment to the person you are caring for and your fondness for them. Think about your relationship with the person and the fact that you’re helping them enormously, even if they may not always seem to know or appreciate it. It can sometimes be hard to see the positive things you are achieving. Writing things down can help – even small things like a joke you shared with the person you’re caring for.

When you’re having a difficult day, thinking about positive times you’ve shared can remind you that there are still some better times and about the good that you are doing for the person.

Take regular breaks

Taking regular breaks from caring is important for your own wellbeing and you will be able to cope better if you take breaks from caring and make time for yourself. Socialising is also very important for your overall wellbeing.

When you do get time to yourself you could use it to catch up on tasks like housework or managing your finances. Or you may want to have some ‘time out’, such as meeting a friend for coffee, enjoying a hobby, or doing something else for yourself.  Also try to find time to reflect and relax.

Many carers find that making time to do things they enjoy helps them with their caring role. By taking regular breaks you may find you are better able to support the person you’re caring for. Having time apart can also be good for both you and the person you are caring for. It can help to ease any tensions or frustrations you have. You don’t have to take long breaks from caring. Having a short time to yourself could make a lot of difference.

Don’t be afraid to ask for help

Caring for someone with dementia can be challenging at times and it’s very important to get support. This includes practical information and advice, and support with how you’re feeling and coping. There are a number of ways to get support from the people around you, including professionals.

Talk to friends or family members you trust. You will know who you feel most comfortable talking to. There are also many professionals who can help. Often the GP is the first person you should see and can refer you to other professionals. These may include, for example, a counsellor or psychotherapist or an occupational therapist.

 

Alzheimer’s Society also offers a number of services that can help you:

• Alzheimer’s Society’s Dementia Connect support line

Alzheimer’s Society’s Dementia Connect support line is open seven days a week providing information, advice and emotional support to anyone affected by dementia. It is a vital lifeline that provides personalised advice, information and emotional support in times of need.

We can respond to any query and can also provide signposting where appropriate. Calls cover a huge range of topics – both practical and emotional – from first noticing symptoms to end of life.

We talk to people worried about their memory, people with a dementia diagnosis, neighbours, friends, passers-by who have found someone in distress and businesses wanting to support a customer better. Our advisers respond to the needs and abilities of each caller and allow people to talk through their feelings and worries, and support and empower them to find a way forward that works for them.

We offer a confidential service and callers can remain anonymous. People can be open about their feelings or challenging circumstances they might struggle to express, either to family and friends or to face-to-face services (where they may fear judgement or unwanted interventions).

We can speak to people in their language and can support callers with speech or hearing problems via Text Relay. Contact us today: 0333 150 3456.

• Talking Point

Talking Point is our online community where you can ask questions, share experiences and get information and practical tips on living with dementia with people who are going through or have had similar experiences.

Users receive valuable support to help ensure no one feels alone when they are affected by dementia. Whether you have dementia or know someone who does, we’re here for you.

It is free to use, open 24 hours a day and people can remain anonymous, to discuss sensitive issues and seek support more privately.

The community is available to anyone with an internet-enabled device, from a smartphone or tablet to a laptop or computer.

You can connect with someone who is going through a similar experience, receive valuable support, and feel less isolated.

Find out more at talkingpoint@alzheimers.org.uk

• Alzheimer’s Society Online Directory

Our comprehensive directory allows you to find advice and information support services near you. Simply enter your postcode or location to find support.

It gives details of community support services provided by Alzheimer’s Society as well as those offered by third-party providers. This gives people affected by dementia choice and control over the services they access.

We also list registered care services in England and Northern Ireland that have a specialism of dementia. This includes care homes, nursing homes and home care providers.

Each directory listing includes clear, essential information about the support service on offer.

Get in touch today at alzheimers.org.uk/find-support-near-you

We want everyone affected by dementia to know that whoever you are, whatever you are going through, you can turn to Alzheimer’s Society for support, help and advice.