This page has information about a number of different sources of support and benefits that may be of help to people with PCA. You may also be interested in our list of organisations that provide information and support.
Registering severely sight impaired (blind) or sight impaired (partially sighted)
If you are registered blind or partially sighted you may be eligible for additional support and reductions on certain services, such as a Disabled Person’s Railcard or a reduced price on local travel. It will also provide additional support for disability benefits applications.
You will need to be seen by a consultant ophthalmologist to assess whether you qualify for being registered either partially sighted or blind.
Please contact RNIB Helpline (0303 123 9999 / firstname.lastname@example.org) for further advice.
Disability benefits in the UK
This section provides an introduction to the main benefits and support services in the UK for which people with PCA may be eligible. The financial disability benefits are aimed at those who need someone to look after them due to physical or mental disability or both. The aim is to assist people with disabilities financially in order to enable them to continue to live in the community as independently as possible.
Disability Living Allowance
A non means tested benefit for those under the age of 65 who need help either with personal care (care component) or with walking (mobility component) or both. It is paid on three different levels depending on the level of need. People with PCA have successfully claimed for the mobility component due to visual difficulties affecting moving around unaided.
A non means tested benefit for those aged 65 or over who need help with personal care or supervision for safety reasons. The benefit is paid on two levels depending on the level of need.
Employment and support allowance
A benefit for people under state pension age who are unable to work because of an illness or disability. This benefit may be paid once statutory sick pay has ended, or if the person is not entitled to statutory sick pay. The person in question must have paid sufficient national insurance contributions. If the person is entitled to the highest rate of the care component of the disability living allowance, they can receive long-term incapacity benefit.
An allowance paid to carers who spend at least 35 hours a week looking after someone receiving either attendance allowance or the disability living allowance care component at the middle or the highest rate.
Carers are not eligible for carer's allowance if they earn more than a limited amount each a week, if they are receiving more than a specified amount from certain other pensions or benefits, or if they are in full-time education. Applying for carer’s allowance may impact the rate of other benefits already received.
Council Tax Discount/Exemption
Households where someone is receiving Attendance Allowance or middle rate Disability Living Allowance may be eligible for a discount or an exemption. If in a two person household one person is receiving disability benefits they may be eligible for council tax reduction. Someone living on their own and receiving appropriate benefits may be exempt from paying any council tax. Those on low income may also qualify for a reduction in their council tax. Further information and an application form can be obtained from the local authority or the Benefits Enquiry Line (BEL).
At minimum most people with PCA should be eligible for the non means tested Disability Allowance or Attendance Allowance. It is advisable to seek advice prior to applying for benefits. If you are uncertain whether you may be eligible for certain benefits or if you need help with the application you can either contact BEL or email or contact your local Citizens Advice Bureau or Age Concern (0800 00 99 66).
Benefits Enquiry Line (BEL)
Tel: 0800 88 22 00 (8.30am–6.30pm weekdays and 9.00am–1.00pm Saturdays)
There are a variety of services available for people with PCA and their families to support them in independent living. Most of these are organised by the NHS and Social Services and also by non statutory services such as the Alzheimer’s Society.
There are variations in the types of services offered in different parts of the UK. To find out what is available for you contact the local Social Services department or your GP.
Community care assessment
The social services department of the local council will carry out a health and social care assessment. Each local authority has its own criteria for eligibility for the assessment and services based on the person’s level of risk for safety and independence. It is essential that adequate information about the person’s circumstances is provided.
The assessment of need usually takes place in the person’s home and it is advisable for the family members or friends closely involved to be present. The process involves assessment of the person’s needs and circumstances, their personal finances and which of the needs identified can be met through the services available. Carers are also entitled for a Carer's assessment. This is a separate assessment of the needs of the carer.
After the assessment has been completed, a care plan is written to describe what services will be provided, when and by whom. If the person’s needs change a review of the assessment and care plan should be organised.
The assessment of the person’s finances will determine how much they will need to pay towards the services, if anything.
If the person has been assessed as needing help from social services, they can opt to receive direct payments to choose and buy the services needed themselves.
The social services work closely with other services, such as health services and voluntary organisations, to provide services to meet the person’s needs. Examples of services that may be available include:
- Improvements or adaptations in your home — An occupational therapist will assess whether any safety adaptations are needed at home. For example they can arrange equipment such as a bath seat or hand rails, etc.
- Meals at home services — If you have difficulty cooking meals for yourself, your council can deliver ready-made meals to your home. This service is sometimes known as 'meals on wheels'.
- Home Care — Carers can visit you at home to help with cleaning, shopping or personal care.
- Day centres — can offer organised and meaningful activity in a safe environment from once per week to several times per week.
- Care homes (residential and with nursing care) — can offer short or long term care. Social services have lists of quality monitored homes.
You can contact social services directly or you can ask your GP or other health care professional to make a referral for an assessment of need.
Community Mental Health Team (CMHT)
Community Mental Health Teams include Psychiatrists, Community Psychiatric Nurses (CPNs), Support Workers and Social Workers. CMHTs are experienced in providing help and ongoing support for people with complex needs. They provide assessment, treatment and support for people with mental health problems and dementia.
To access the services provided by the local CMHT you need to be referred by your GP.
The voluntary services available vary from area to area. Contact your local social services department, Citizens Advice Bureau, council for voluntary service, or library for information about the local services and groups. The Alzheimer’s Society and Age Concern may also be able to provide information about services available locally.
Examples of other professionals that may be able to help with specific difficulties or problems include:
- Admiral Nurses (via DementiaUK or Tel: 020 7874 7210)
- District nurses and community nurses
- Occupational therapists
- Continence advisers
Strategies and Assistive technology
Medications that are available to treat patients with typical Alzheimer’s disease may be helpful to some people with Posterior Cortical Atrophy, however these are designed to treat the symptoms of the disease and are not a cure. There is therefore a need for strategies that may help to cope with visual impairment. Here we’ve tried to put together some relevant advice from a number of sources, primarily the Alzheimer’s society, the RNIB and the Thomas Pocklington Trust. It is quite general advice for people with visual loss or Alzheimer’s disease, so you may or may not find that it works for you.
The Alzheimer’s Society have produced a factsheet about vision and Alzheimer’s disease. Visuoperceptual difficulties in dementia (factsheet 527) outlines potential perceptual problems, but also gives some environmental adaptations and tips for minimising visuoperceptual problems.
There are articles that have been published in the Alzheimer’s Society Living with Dementia magazine that relate to PCA. One, entitled “Dementia and Sight Loss”, includes accounts of personal experience of someone with PCA and sources of advice. It is on pages 16-17 of the August 2010 edition. Another, an article about caring for someone with PCA, can be found in the December 2010 edition (pages 12-13).
Although written for people with many different sorts of visual problems, the RNIB’s “Living with sight loss” pages may have some strategies that could help. There are suggestions about using colour contrast to make important objects, for example door handles or handrails, stand out. There is also advice about good lighting, which could help lessen some of the visual symptoms. Reducing shadows, using non-shiny flooring and reducing glare and minimising obstacles may help. You may also want to read the booklet entitled “Improve the lighting in your home” produced by the RNIB and Thomas Pocklington Trust. More advice about lighting and design can be found at the Pocklington Trust website.
The RNIB also have advice about making the most of your sight and offer low vision services who can give you an assessment and help to establish which devices and equipment would be of most help to you.
There are a variety of devices that have been designed for people with sight loss that may be helpful to people with Posterior Cortical Atrophy. Examples include telephones with large clear buttons, talking clocks and reading machines. There’s plenty of information on the RNIB website about using computers, telephones and other access technology. Their reading and writing pages also have details of talking books and newspapers, and other reading aids such as typoscopes. Intuitively, making text larger through magnification or large-print books makes it easier to read. Whilst this is true for some people with PCA, others find that smaller text is easier to read than large text (Crutch et al. 2010).
- RNIB website
Alzheimer’s Society articles
- Thomas Pocklington Trust
- Crutch SJ, Lehmann M, Gorgoraptis N, Kaski D, Ryan N, Husain M, Warrington EK. Abnormal visual phenomena in posterior cortical atrophy. Neurocase 2010; 2:1-18.