One of the hardest things in life is watching a partner or parent’s mental decline as symptoms of their dementia advance. As much as the support you offer is important, so too is the support that you need.
Caring for someone with dementia, when you are yourself approaching retirement or in later life is both physically and emotionally demanding. As such, it is important to know that there are a great many support organisations and services available to help you both live with the dignity you deserve. In this short guide, we hope to sign post some of the most helpful.
Social care, practical and emotional support
The progression of dementia means the behaviours of the person you care for will change over time. These behavioural changes (link to Guide to Dementia symptoms page) can exert a great deal of strain on relationships and can leave you feeling isolated and rejected.
Having a carer’s assessment is the best way to ensure you get the support you need. Your own health is as important to the person you care for as it is to you. It is unrealistic to think that you can do everything yourself. There should be no such thing as guilt at not moving someone with limited mobility on your own – especially if you are elderly. A carer’s assessment can help put in place the services you need to guarantee a better quality of care for your partner/parent. Your plans for retirement can still be taken into account as well as any caring duties that you are willing and able to carry out.
It’s important to spend time as a couple doing things you both enjoy so that your role as carer does not take over your role as a spouse. Talk about support with arranging activities during your assessment with your local authority. Find out more about Carer’s Assesments.
Caring is a very demanding job, so if you care for someone with dementia it is important you know where you can go for help and support and if respite breaks are available though social services.
If you care for someone with dementia, check that both you and they are getting all the benefits and tax credits you’re entitled to. For example, you may be able to claim Disability Living Allowance or Attendance Allowance for the person you care for, and Carer’s Allowance for yourself. You or the person you look after may be entitled to a discount on your council tax. Some carers are entitled to a discount, as are some people who have a severe mental impairment.
NHS Choices Money and legal section will guide you through all the benefits you may be entitled to.
Assistive technology is available for people with dementia or other conditions that affect memory. At Dementia provides access to technology aimed specifically at people with dementia, including:
- daily living aids: special utensils to help people eat and drink
- stand alone devices: aids that can be used without being linked to a monitoring centre or carer, such as picture telephones and calendar clocks.
Find out more about aids and equipment, including funding for these.
Who can I talk to?
Being a carer can make you feel isolated, but many people are in the same situation. It can help to talk to a carers’ support group. For details of your local carers’ support group, contact Carers Direct on freephone 0808 802 0202. Lines are open 8am–9pm Monday to Friday and 11am–4pm on weekends and bank holidays.
Find out as much as you can about the type of dementia the person you care for has. There are local Alzheimer’s Society groups throughout the country, where you can get information and advice on the condition and support as a carer.
Looking after someone with dementia can be exhausting as well as rewarding, and it’s essential that you take regular breaks. Our time off from caring section has suggestions on how to fund a break, links to organisations that arrange holidays for people with disabilities, and information on organising respite care.
Admiral nurses are specialist dementia nurses who work with people with dementia, their families and carers. They aim to improve the quality of life for carers and people from dementia.
To talk to a trained specialist dementia nurse about caring for someone with dementia, call Admiral Nursing Direct on 0845 257 9406. Lines are open 11am–8.45pm Tuesdays and Thursdays and 10am–1pm on Saturdays.
If you have difficulty managing personal care or day-to-day tasks or need watching over to make sure you are all right, you may be able to claim a non means-tested benefit – Disability Living Allowance if you are under 65 years old or Attendance Allowance if you are aged 65 and over. You can find out more about these and other benefits you may be entitled to by calling Age UK.
More about Carer’s Allowance.
Respite care is a short-term solution to allow you, as the principle carer, time to recharge your batteries and tend to your own needs. A short respite break can be beneficial to the person you are caring, too. You will find Alzheimer’s Society an excellent source of information for issues and advice around Respite Care.
The Department of Health and NHS are committed to establishing the UK as a beacon of progressive care services for people suffering from dementia. The key aims are to boost dementia funding, address quality of care, create dementia friendly communities and increase public understanding of dementia. We have included links below that feed into that strategy and may be of use to you.
Find out more about dementia
The more you know about dementia, the more comfortable you will feel spending time with the person with dementia or their loved ones. Dementia can make people behave differently, but once you understand that these changes are part of the illness, you will find it much easier to take them in your stride. Visit Understanding Dementia.
Useful dementia related links
SOURCES: NHS Choices, Alzheimer’s SocietyLast modified: June 10, 2021