Getting help with caring for someone with dementia

Caring for someone with dementia can be a hard and demanding task. The person is likely to get worse with time and need more care and more attention. Caring can easily turn into a 24 hour a day responsibility - far too much for one person to cope with.

Don't try to manage alone

Don't take on all the work and responsibility by yourself, even if you feel it's what you want to do. If you do too much you may damage your own health and not be able to care at all.

Sharing the caring

Other people can help you. Explain to members of the family, friends and neighbours about dementia. You can arrange for them to be sent our leaflets. Ask them if they can help. Perhaps someone could sit with the person with dementia for a couple of hours to let you go out, for example.

Just as important is the help you can get from services and benefits provided by the social work department, the health service, the Department for Work and Pensions and voluntary organisations. Don't think twice about asking them for help. The person with dementia, their family and friends have all paid taxes towards those services. You have a right to have help.

Health services

The doctor (GP) is the first person to contact. Make sure the person with dementia has a proper diagnosis. You can ask for a referral to a specialist. Tell the doctor about any changes in the person's condition. If the doctor asks how you are, don't say 'fine' if you are exhausted or upset. Be honest and explain exactly how you are feeling.

We have a booklet, Getting Help From Your Doctor, which you may find useful. The GP is also the person to ask about all the other health services listed here. The GP or specialist will advise on whether the drug treatments available for Alzheimer's disease might be suitable. At present the treatments will only help some people, and they are not a cure, but research is continuing.

• Community mental health or community psychiatric nurses give practical help and advice on mental health. They can help you to find ways of coping with difficult behaviour
• District or community nurses provide some nursing care at home. They can help with continence problems
• Health visitors advise on general health
• Physiotherapists can help with the person’s mobility, independence and reducing the risk of falls
• Day hospitals provide medical assessment, rehabilitation and occupational therapy
• Respite care may sometimes be available in hospital for people with severe dementia.

Social services

The person with dementia has a right to a community care assessment from the local social work department to work out what his or her needs are and what services would help. Carers also have the right to an assessment of their own needs. There is no charge for an assessment, but there may be charges for services, depending on the person's income.

Free personal and nursing care is available for everyone in Scotland aged 65 and over who needs it, whether at home, in hospital or in a care home. Free nursing care is available for people of any age.

If you don’t agree with the care assessment or are not happy with any of the services being offered, you should speak to the person who has been co-ordinating the assessment and negotiate any changes you may need. If you are still not satisfied, you can make a formal complaint.

• Home care services assist with personal care
• Home support services can spend time with the person with dementia and give the carer a break
• Occupational therapists can advise on practical aids and safety. For example, they can arrange for rails to be fitted in the bathroom or advise on problems like dressing
• Day centres provide activities suitable for people with dementia, and a chance to socialise. In some areas there may also be care available in the evenings and at weekends
• Respite care in a care home may be available to give the family a break
• Other services may be available, such as laundry services and meals on wheels.

Money and legal matters

People with dementia become gradually less able to manage their own affairs. Our booklet, Dementia: Money and Legal Matters explains how to help and how to avoid problems in the future.

There is a range of benefits that may help you and the person with dementia. Contact the freephone Benefit Enquiry Line for disability and carers’ benefits on 0800 88 22 00 (textphone users 0800 24 33 55). They can advise confidentially on all benefits for people with dementia and carers and can complete forms for you over the phone. Or you can contact your local Citizens Advice Bureau or our 24 hour Dementia Helpline on freephone 0808 808 3000 for information.

• Attendance Allowance is for people 65 or over who need help with personal care (attention), or who need someone to be with them to help keep them safe (supervision).
• Disability Living Allowance is similar to Attendance Allowance but for people claiming before the age of 65. It can also help with mobility needs.
• Both of these are tax-free and not means tested. You do not have to have paid National Insurance contributions to qualify.
• Carer’s Allowance is for people who cannot work because they spend at least 35 hours a week caring for someone who is receiving Attendance Allowance or Disability Living Allowance at the middle or higher rate or Constant Attendance Allowance because of industrial or war disablement. You do not need to be a relative or to be living with the person with dementia to claim it. However, it overlaps with some other benefits, which means you (or the person with dementia) will not always be better off by claiming it. Take advice before claiming from your local welfare rights service or your Citizens Advice Bureau.
• Pension Credit has two parts, a Guarantee Credit, ensuring a minimum income for people aged 60 or over, and a Savings Credit for people, aged 65 or over, who have made modest provision for their retirement such as savings or occupational or private pensions, including the state retirement pension. Contact the Pension Credit claim line on 0800 99 1234.
• Incapacity Benefit can be paid to someone of working age who is not able to work because of illness or disability and has paid enough National Insurance contributions. If not, he or she may still be able to claim Income Support.
• Other benefits include Income Support, the Social Fund, Housing Benefit and Council Tax Discounts and Benefit.

Where can I find out more?

Alzheimer Scotland exists to help people with dementia and their carers. We provide information, support and a network of services and carers' support groups around Scotland.

Our confidential Dementia Helpline, on freephone 0808 808 3000, offers information and emotional support 24 hours a day, seven days a week.. Call anytime to talk things over or for our free information pack.

February 2008