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19 Feb 2016


You may be missing out on financial and practical help if you’re caring for a person with dementia and you don’t know your rights, says Christina Macdonald

Do you know your rights as a carer? I ask purely because I know that when you care for a person with dementia it’s so easy to get wrapped up in the daily challenges of caring and overlook the bigger picture. I cared for my mother Hazel for seven years, but it was only recently while researching a book on dementia that I discovered some interesting facts about carer’s rights. Unfortunately, nobody in the healthcare system had thought to share those facts with me while she was living at home alone, when they would have been most helpful. So in case you aren’t fully aware of your rights as a carer, I thought I’d share them here. As the saying goes, knowledge is power.

Flexible working
Firstly, as a carer, you have a legal right to ask your employer for flexible working hours. It doesn’t matter what level of care you are providing for a relative or loved one. Caring for them can involve visiting them once a week to help with the housework and make sure they are OK, or it might be more hands-on than that and involve daily visits. Bottom line, if you are providing some form of care, then you are entitled to request flexibility at work.

Your employer is not obliged to agree, but they have to consider your request and if they refuse, they must give a specific reason why they are unwilling to offer you flexibility.

My employer was reasonably understanding of my situation and allowed me to work remotely when I needed to take mum to an appointment that would have meant I wouldn’t have made it back from work in time to take her. I occasionally worked from mum’s home or left work early. So long as I made up the time and met my deadlines, they were happy.

Asking your employer if you can work in a more flexible way will not only make you more productive at work but also help you manage your stress levels. It’s in everyone’s interests to make it work and if you have a good relationship with your boss they will hopefully understand that.

Time off in an emergency
You also have the right to take a reasonable amount of time off work for an emergency involving the person with dementia. It’s up to your employer to decide whether or not this is paid or unpaid.

I took some time off when my mother had to undergo an operation, as it was clear that she was going to need me to take her to and from the hospital, visit her while she was there and stay with her when she came home. But I didn’t know my rights, and took the time out of my annual leave, leaving me with less time to take a much-needed holiday later in the year.

Incidentally, if you find it easy to talk to your boss, it’s worth letting them know that you are caring for a person with dementia. You may find they have had some experience of a similar situation. My former boss had an elderly mother who was housebound, so clearly understood the challenges of caring for the elderly.

An assessment
If you need support caring for a loved one, social services should offer you an assessment and if not, you are entitled to ask for one. Whatever your level of need, or whatever you earn, you are entitled to have the assessment, which is intended to look at how caring affects your life and whether you are willing or able to carry on caring. After the assessment, social services will decide if you are eligible for support. Even if you aren’t eligible for support, they must give you information on local services to prevent your needs from increasing.

Carer’s Allowance
If you care for the person with dementia for more than 35 hours a week and your income is below a certain level, you may be entitled to a Carer’s Allowance, though you will need to fit certain criteria. For more information, visit

You are also entitled to a benefits check. For more information, call The Carers UK advice line on 0808 808 7777.

Benefits for the person with dementia
It’s also important to flag up that the person you care for is entitled to a needs assessment by the local authority (council) if they haven’t already had one.

The person with dementia may be entitled to Attendance Allowance if they are 65 or over. This is not means-tested and is tax-free. There are two levels and it can be applied for by visiting
If the person obtains Attendance Allowance, they might also receive extra Pension Credit, Housing Benefits or Council Tax Reduction. The link above will have more information.

So the message here is simple – don’t do what I did and assume that you have to carry the burden all by yourself. Do your homework and you may find that it is time well spent, which will benefit everyone in the long term.

More information on benefits for carers is available at https://www.carersuk.orgOther sources of support
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