4. Care and mobility benefits
Attendance allowance, Disability living allowance and Personal independence payment
People with dementia do not automatically qualify for disability benefits - tests are required to determine the level of need. For people who do qualify, these benefits provide extra help to deal with the practical effects of a disability. They are tax free, and do not depend on National insurance contributions. Payment is not affected by the person's savings or income. A medical assessment may be required. These benefits are paid at different rates, depending on the person's needs. They can be claimed whether the person works or not, and whether they live alone, with their family or with other people.
If your care needs started after the age of 65, or you have not made a claim until then, you should claim Attendance allowance (AA) (see below). This is for help with personal care, not mobility.
If you have care and/or mobility needs and are aged under 65, you should claim Personal independence payment (PIP) instead. You must be under 65 when you make your first claim. PIP is the new benefit that replaced Disability living allowance (DLA) from June 2013. No new claims for DLA have been accepted since this date.
It is important to seek advice if you are already claiming one of these benefits and your needs change. If you are already claiming DLA you should be transferred to PIP by 2018. You don't need to initiate the claim for PIP if you are already getting DLA - you will get an invitation to claim. However, if you don't respond to the invitation, your DLA will be stopped. People who receive PIP before they are 65 will be able to stay on it after they reach 65.
The claim forms for PIP and AA are very detailed and lengthy. There are questions about the activities that the person with dementia finds difficult or impossible to carry out, and about their need for care and supervision. You should consider the bad days as well as the good when thinking about the help needed. It is very important to get advice from a professional (including advice centre staff) on filling in the form to make sure you are giving the information that is needed (see 'Other useful organisations' at the end of this page).
Personal care needs might include supervision of, or help with, activities such as washing, dressing, eating, going to the toilet, turning over or settling in bed, taking medication, avoiding danger, or attending social or recreational activities. If you have a disabling condition such as dementia and are over 65, you may qualify for AA at one of the following levels:
- Higher rate - if you need frequent help or prompting with personal care like washing or going to the toilet, or continual supervision to avoid danger during the day and also need help with personal care either for a prolonged period or several times during the night, or if you need watching over.
- Lower rate - if you need frequent help or prompting with personal care, or continual supervision throughout the day, or help either for a prolonged period or several times during the night, or if you need watching over.
Personal independence payment
PIP has daily living components and (unlike AA) also mobility components. Depending on your situation, you may qualify for either or both. If you have a disabling condition such as dementia and are under 65, you may qualify for the daily living component of PIP at one of the following levels:
- standard rate - if you have a limited ability to carry out daily living activities
- enhanced rate - if you have a severely limited ability to carry out daily living activities.
If you have difficulties getting out and about, you may qualify for the mobility component of PIP at one of the following levels:
- standard rate - if you have limited mobility, which can include the ability to plan a journey or manage it unaided (it's not just about the ability to walk).
- enhanced rate - if you have severely limited mobility (as above).
Making a claim consists of two stages: the basic claim and the claimant questionnaire. The basic claim is made by telephone, or in writing by completing a PIP1 form (see Personal independence payments in 'Other useful organisations'). This is to establish the claim, and to ensure that you are eligible to apply.
Once the basic claim has been successfully made, a 36-page claimant questionnaire (PIP2 - How your disability affects you) will be sent to you. This is aimed at gathering more information about how your health condition or impairment affects your day-to-day life. This form must be returned within one month, though exceptions may be made in some cases - contact the DWP. During the basic claim stage, people who may have additional support needs, for example because of a cognitive impairment, should be contacted by the assessment providers to attend a medical assessment.
The assessment (either in writing on the PIP2 or in person) is based on questions about activities. People can be assessed as having limited ability or severely limited ability.
Disability living allowance
Although this benefit is being phased out for people aged 16-64, some existing claimants may still be re-assessed for it when their claim comes up for review. This is because they live in an area where PIP isn't yet being introduced for existing claimants. If this affects you, you will need to complete the form as you have in the past, referring to your care and mobility needs as they currently are. You will be re-assessed for PIP at a later date.
If you go into a care home or hospital, temporarily or permanently, get advice about how your AA, PIP or DLA might be affected.