Continence management - Costs of continence care

This information is for carers of people with dementia. If the person with dementia has difficulties with continence there is a lot that can be done to help or even prevent the problem. 

If you require further information about continence or other issues regarding dementia call the freephone Dementia Helpline 0808 808 3000. 

Costs of continence care

There could be some extra costs, such as protective bed sheets, laundry services, or even a new bed or mattress. If you do have to buy additional equipment or continence aids, find out if you can apply for funds to help with these costs. Below are a number of benefits you might be entitled to and what conditions you will need to meet in order to qualify for them. 

It is always worth checking to see if there is help you could apply for. Seek advice to help you claim any of these benefits - ask the Citizens Advice Bureau (details in your local phone book).

Attendance Allowance and Disability Living Allowance

People who have personal care needs may be able to claim Attendance Allowance (AA) (if they are over 65), or the Care Component of Disability Living Allowance (DLA) (if they are under 65). Personal care includes help with toilet needs or managing continence. 

People under 65 whose ability to walk is severely restricted because they experience severe discomfort may be able to receive the higher rate of mobility component of DLA. The term 'severe discomfort' can include incontinence brought on by the act of walking. Therefore, it is possible for someone who can only walk very short distances because walking induces incontinence to receive the higher rate mobility component. 

AA and DLA are both tax-free non-means tested benefits and can be paid regardless of any other resources. 

Community Care Grants from the Social Fund

People getting Pension Credit, Income Support, Income Based Jobseekers Allowance and Income Related Employment Support Allowance can apply to the Social Fund for Community Care Grants. Community Care Grants are intended to promote independent living in the community. They may help with additional costs such as a new bed, mattress, bedding, clothing, underwear and in some cases a washing machine, although a grant may be refused if the help is available from the National Health Service or elsewhere.  

Community Care Grants are discretionary and there is no legal right to them. People who are refused a grant are often successful after challenging the decision through review procedures. 

Severe Disability Premium and Enhanced Disability Premium

Some people who get AA or DLA may qualify for Severe Disability Premium or Enhanced Disability Premium as part of Pension Credit, Income Support, Income Based Jobseekers Allowance, Income Related Employment Support Allowance, Housing Benefit and Council Tax Benefit. These are paid to assist people with the increased costs of living with a disability. They are not paid specifically in connection with continence, but people with difficulty managing incontinence may receive a qualifying benefit which triggers these extra payments. 

Free personal care

Personal care is free for people over 65 in Scotland, provided they are assessed as needing it. Contact your social work department for an assessment. Personal care includes help with:

• continence management – eg toileting, catheter/stoma care, skin care, extra laundry, bed changing

• personal hygiene - eg bathing, washing hair, shaving, oral hygiene, nail care.
• For full details on free personal care contact the Dementia Helpline 0808 808 3000 for an information sheet or see Free personal and nursing care - a short guide

Don't try to cope alone

Carers often find it very hard to discuss continence issues, but knowing other people have faced the same problems and overcome them helps. Try not to let these problems get in the way of your relationship with the person with dementia. Talk to your GP, the community nurse or continence advisor. Another way to find out how to cope is by discussing this problem at carers' meetings, where you will be in a supportive group with other carers who understand what you are going through.

Having to provide intimate care in this way can be difficult, but remember there are ways to manage the incontinence - and support, help and advice are available.