FAQ

It is a frightening diagnosis to face but there are many things you may want to consider to ensure your comfort and dignity both now and in the future. 

Discussions with your GP and Consultant

It is vital to have a good relationship with your GP and consultant and that you feel comfortable about asking for advice.  It is advisable to be accompanied by a close family member or friend when visiting your GP or consultant as it is difficult to remember all that has been said and agreed.  At this stage the emphasis will be on enhancing your memory and keeping you in good general health.

Discussion with Friends and Family

It is usually helpful to have a broad and wide ranging discussion with friends and family members that you know have your welfare at heart.  When thinking about the future consider the possibility and practicalities of being cared for in your own home or whether you would prefer to be cared for in a residential home.  It is important to recognise that any decisions made at this stage must be seen as flexible and able to be reviewed. 

Managing Your Affairs

It is probably advisable not to have a credit card if you find keeping track of your finances difficult.

It may be safer for you to use a debit card rather than cash but if you are unable to remember your four-digit number when using a chip and pin debit card you can ask your bank for a chip and signature card which enables you to sign your name as usual.  If you are unable to sign your name banks can provide photocards to identify you visually.

It may be easier for you if all your pensions and benefits are paid into your bank account and payments go out from the same account.  Most regular bills can be paid by direct debit which means that the bank pays the bills automatically so you will not forget them.  If you would prefer to choose a person you trust to manage your account for you your bank will set up a ‘third party mandate’ to enable this to happen.
If you feel you would like to arrange for all of your affairs to be dealt with by someone else if you become unable to do this for yourself you may consider making a Lasting Power of Attorney for health and welfare.  This is a legal process which enables formal decision making powers to be given to someone you trust but they only take over when you are no longer able to decide for yourself. 

Staying at Home

If you decide that you would prefer to be looked after at home there are services and benefits which can help to make this easier.

Services

Community Care Assessment

Local authority social services departments are responsible for assessing the needs of people who may need care services to enable them to continue to live at home.  Each local authority has its own assessment procedure and the social services department will publish information on how to apply, what kinds of services could be provided and who is eligible to receive those services.  You will be able to get the information from your social services department or your local library.

Each local authority has its own criteria for deciding who is eligible for assessment and compares applicant’s needs against those criteria.

The assessment is carried out in your own home usually by someone from social services who may request extra information from other professionals such as your GP, consultant or community nurse.  The assessment involves looking at your needs and circumstances and assessing your finances as the local authority can charge for the services it arranges if you are able to contribute towards the cost.  The amount charged will vary according to the local authority but charges are meant to be ‘reasonable’.  If your savings are £23,000 or above you will have to pay for all of your home care costs but if your savings are below £14,000 you should not have to pay but this may depend on your income.

The kinds of services that you may find helpful are meals on wheels, home care and day care.  When the assessment has been completed a ‘care plan’ is written which describes the services which you should be provided with, who will provide them and when they will begin.  You will be given a copy of the plan and the name and contact details of your care manager who is responsible for seeing that the services are delivered.  You may have to wait for services to begin or some may start and others follow later.

Services may be provided directly by social services or arranged through other agencies such as health or housing departments, or voluntary or private organisations.

Home care workers can help with personal care if you are having difficulty in washing and dressing for example or they may prepare simple meals.
Day care may be available locally in the form of day care centres or drop in centres and provide social activities and a meal.  Transport to and from these centres is often provided.  You may also be put in touch with centres run by local groups or charities.

Direct Payments

If you have been assessed as needing community care services you may prefer to make a request to the local authority for a Direct Payment so that you can arrange and pay for your own services.  Rules vary across local authorities and they must be convinced that you can manage the payment alone or with assistance.

Benefits

You may be eligible for Attendance Allowance if you are over 65 and you find things like washing and dressing very difficult or you need someone to make sure that you are safe.  This benefit is tax free and does not depend on National Insurance contributions.  Getting the benefit may also mean that you can receive extra Pension Credit and Council Tax benefit.  Attendance Allowance is paid at two different rates at the time of writing (May 2009):

• the lower rate is for people who have difficulties either during the day or at night (£47.10p per week)

• the higher rate is for people who have difficulties both during the day and at night (£70.35p per week)

Council Tax Benefit. 

As you live alone and have a diagnosis of dementia, if you are receiving Attendance Allowance you will be exempt from paying any council tax.

If you are receiving Attendance Allowance and you have a dedicated carer who spends at least 35 hours a week looking after you they may be eligible for the Carers Allowance.  This is £53.10p per week and your carer does not have to be related to you or living with you to receive the benefit.  The Carers Allowance gives most carers under the age of 65 a national insurance credit each week to help protect their state pension rights but the allowance is taxable.  In some cases the person being cared for could lose some of their benefits if Carers Allowance is claimed so it is important to seek advice before making a claim.

You may be eligible for NHS Continuing Healthcare Funding if following an assessment your main need is shown to be related to your health.  To apply for this benefit you need to contact your GP, social worker or community nurse to ask them to arrange for your needs to be assessed.  A person qualified to carry out the assessment will visit you to discuss your needs with you using a checklist which meets national criteria.  If you meet the criteria on the checklist you will be referred for a full assessment.

Before the assessment is started it needs to be signed to give consent to the assessment process and to the sharing of information arising from the assessment.   The person who signs can be you or someone who has the proper legal authority to sign on your behalf.  This is a very important issue and you, or your next of kin may wish to investigate this further before proceeding with a referral so you are clear about who has the correct authority to give consent and to make decisions.  You should speak to a social worker to find out if receiving NHS Continuing Healthcare Funding would mean any loss of your other benefits.

The next stage of applying for NHS Continuing Healthcare Funding involves a more detailed assessment of your needs and will cover your physical, mental, psychological and emotional needs.  It will include all the people who are involved in your care to help build a complete and accurate picture of your own particular situation.  Once completed the person carrying out the assessment will discuss how your needs may best be met, and will look at different options for your future care with you and with your carers. 

The final stage of the process involves your assessment being read and considered by a panel of experts who meet together to decide if assessments indicate that people are eligible for NHS Continuing Healthcare Funding.

If you are assessed as being eligible for NHS Continuing Healthcare Funding the payment for the care you receive will go straight from the NHS to the organisation responsible for providing your care.  Your eligibility may change over time so you will be reviewed by a registered nurse within three months of your first assessment and then at least annually.

Going Into Residential Care

If you decide that you would prefer to be cared for in a residential home you need to speak to a social worker about your options in regard to funding and claiming assistance from your local authority.

 Each local authority carries out an assessment on any applicant to receive local authority funding to pay for the costs of residential care.  If it is established that you have assets above £23,000 you will not be eligible for local authority funding.   The assessment will take into account all income from pensions and benefits and capital including savings, investments and the value of your house.  Any investment with a life assurance element will not be included in the assessment. 

If you own your own property you will probably have to consider selling your home to fund your own care until your assets reach the threshold that qualifies you to receive local authority funding. If your assets are above £14,000 but below £23,000 then the local authority will make a contribution to your care fees.

The amount contributed will depend on your income and capital.  The full amount of your state pension and fifty per cent of any private pension will be classed as income.  Your allocation will be calculated after allowing you around £22 per week for personal expenses.  If you are trying to sell your home the local authority can provide funding towards your care fees while you wait for a sale, this is called the Deferred Payment Scheme.

Further help from Hope for Home

Look in the Hope for Home section called ‘Getting Help’ for information about health and social care staff and provision of services including those in the voluntary and private sector.

Phone or send an email to Hope for Home with your questions.