Practical help

To download this document- Practical help 

 

Whilst it is important to try and maintain your own independence, having a diagnosis of dementia means that at some point, you will require practical help from other people. This can be in many forms. Whilst it is always better to try to do what you can for yourself, having people to help do this with you, may make life not only easier but less stressful also.

 

Don’t be embarrassed to ask for help. Ultimately practical help will enable you to cope better at home.

 

Below are some examples of practical help:

 

·      Apply for Attendance Allowance

This is what the government website says about Attendance Allowance:

 

‘Attendance Allowance is a tax-free benefit for people aged 65 or over who need someone to help look after them because they are physically or mentally disabled. You may get Attendance Allowance if:

 

ü  You have a physical disability (including sensory disability, such as blindness), a mental disability (including learning difficulties), or both

 

ü  Your disability is severe enough for you to need help caring for yourself or someone to supervise you, for your own or someone else’s safety

 

ü  You are aged 65 or over when you claim

 

Normally, you must have had these care or supervision needs for at least six months. However, if you are terminally ill, there are special rules for claiming the benefit.

 

Attendance Allowance is not usually affected by any savings or income you may have.

 

To get Attendance Allowance, your disability must be severe enough for you to need any of the following:

 

ü  Help with things such as washing (and getting in or out of the bath or shower), dressing, eating, getting to and using the toilet, or communicating your needs

 

ü  Supervision to avoid putting yourself or others in substantial danger, for example, needing someone to keep an eye on your medical condition or diet, or because you cannot control the way you behave

 

ü  Someone with you when you are on dialysis

 

There are two rates of Attendance Allowance depending on how your disability affects you:

 

Ø  The lower rate, if you need help with personal care frequently or supervision continually throughout the day only, help with personal care or someone to watch over you during the night only, or someone with you when you are on dialysis.

 

Ø  The higher rate, if you meet both a day and a night condition for the middle rate, or if you are terminally ill and claiming under special rules.

 

You can get Attendance Allowance even if no one is actually giving you the care you need - even if you live alone.’

 

If you are under age 65, you may be able to get Disability Living Allowance.

 

·      Informal help

This can be from friends, family and neighbours. Examples are going shopping with people so that they can prompt you to buy the foods you need, preparing food, reminding you to take tablets or helping you put clothes out in the order that it is easiest to put them on.

 

·      Voluntary organisations

There are several local and national organisations that may be able to offer practical help and advice. You can find them by searching the Internet, or by visiting your local library, council or Citizen’s Advice centre.

 

·      Council tax

As your dementia progresses, you may be entitled to a council tax rebate. When your GP feels you are able to qualify they can fill out a medical report form, which you can give to the council tax office. To qualify for this rebate you must be said to have, ‘severe mental impairment’ and this would entitle you to become invisible for council tax purposes. This means that if you live alone you will not pay council tax and if you have a partner, they will be counted as single and therefore receive a 25% discount even though you are still living there. Please note that this is not applicable to people with mild dementia. Ask your GP about this or the Memory Service for advice.

 

·      Social worker needs assessment \ Carer Assessment

Ask for a social worker needs assessment if you feel you may need practical help at home. You can be assessed in your home and if you have a carer, they can request a carer assessment in their own right. Whilst you may not have someone you would call a ‘carer’ if you have been newly diagnosed, there may come a time when you would want the help of someone close to you such as a family member, friend or neighbour. If this becomes necessary, they may find it helpful to develop a carer support plan. This details the difficulties that you both face because of dementia and what is planned to help to try and address those difficulties. Look under council in the phonebook. Please note that you be asked about your finances and you will need to fulfill their eligibility criteria.

 

·      Self directed support

Self directed support is about people being in control of the support they need to live their life as they choose.

Some people manage their support on their own. Others need help - from family or friends or people who are paid to help.

In the traditional system, professionals like social workers made all the decisions about the support people could have and who would provide it. The person needing support often felt they had no control.

 

There are a number of different types of self directed support. These include

  ü  Direct payments

  ü  Personal budgets

  ü  Individual budgets

 

What is a direct payment?

Some years ago, the Government introduced direct payments to enable people to have more power in how their care and support was provided. A direct payment gives you the ability to choose and buy your own care using an agreed amount of money (less any amount you have to pay yourself) to pay for the care service of your choice.

A direct payment is not a benefit and does not affect any benefits you receive, or prevent you from claiming benefits.

 

What is a personal budget?

A personal budget is the funding given to someone after they have been assessed and which should meet their needs. They can have the money as a direct payment or can choose to manage it in different ways. What is important is that these budgets give people a clear amount of money and the right to choose how this is managed and spent.

 

What is an individual budget?

An individual budget is an overall budget for a whole range of services - not just from social care - which you can choose to receive as cash or services or a mixture of both. Individual budgets combine money from the different agencies that currently help you.

 

These might include:

  ü  Local authority adult social care

  ü  Integrated community equipment services

  ü  Disabled Facilities Grants

  ü  Supporting People funding for housing-related support

  ü  Access to Work

  ü  Independent Living Fund.

 

What is a self assessment questionnaire?

A self assessment questionnaire (SAQ) is a way for the council to understand what support you may need and to estimate the risks to you if the help is not provided. The council then use this information to decide what money or budget you can have to help you meet your needs.  It will help you think about different areas of your life and what level of care and support you need to achieve maximum independence.

The SAQ can be completed by you, or you may prefer to do it with help and advice from other people, such as friends or family, or someone from adult social care.

 

What is a resource allocation system?

A resource allocation system or RAS is the way the council work out what is a fair and reasonable amount of money for people to have in their personal budget. When your assessment has been completed, points will be attached to the answers and these will then be converted into money for your budget. 

 

What is a support plan?

Once you have completed your self assessment questionnaire and financial assessment and know what money is available to you to spend, you will be asked to complete your support plan.

You can complete it on your own or with the help of friends, family or a social worker/care manager.

Your support plan is intended to identify the things that are important to you and what you would like to change to help you live the best quality of life that is possible.

It should look at your whole life and what’s working and not working for you. It should identify the help and support that you feel you need and how you would like to receive that assistance.

There will be different ways of preparing your support plan. You can write things down, use pictures and diagrams and different ways of presenting the information like DVDs.

 

It will look at things like:

  ü  What is important to me?

  ü  What do I want to change?

  ü  How will I get the support I need?

  ü  How will I use my personal budget?

  ü  How will I manage and stay in control of my support?

  ü  How will I make this happen?

 

A support plan does not have to be complicated; you can make it as detailed or simple as you want.

 

Information provided by Walsall Council’s People First team.

 

·      Occupational therapy assessment

You can ask for an occupational therapy assessment if you are having difficulties in your home with for example, getting into the bath. The occupational therapist will assess you and advise on any adaptations that would benefit you. This may include assistive technologies. Look under council in the phonebook.

 

·      Home care

Home care is provided by numerous private agencies or by the council if you fulfill their eligibility criteria. Private home care agencies will do a range of interventions to help you. This ranges from shopping, prompting to take tablets, preparing and cooking food, cleaning and personal care – helping you wash and dress.

 

The council home care interventions tend to be aimed more at personal care and for people whose dementia has advanced. You can use Attendance Allowance to help pay for this kind of service.  Lists of home care agencies can be obtained from the Care Quality Commission. Their website is: http://www.cqc.org.uk/

 

For the council home care service, you be asked about your finances and you will need to fulfill their eligibility criteria. Look under council in the phonebook for this service which is accessed via a social work needs assessment.

 

·      Day care / activities

These are centers where you can go for a day or more a week and take part in activities designed to benefit people with dementia. These are usually group activities such as orientation groups, creative groups or ‘brain training’ type groups. People usually enjoy the social side of these places and look forward to getting out of their home for a while.

 

This can also give carers a break and give them opportunity for time for themselves.

 

Some of these services are run by voluntary organisations and some are privately owned and some council commissioned. Look under council in the phonebook for these services, which is accessed via a social work needs assessment. You be asked about your finances and you will need to fulfill their eligibility criteria.

 

·      Dementia Cafés

Dementia cafés are places for social interaction, support and information. They are for people with dementia and their carers. They give people the opportunity to share thoughts, concerns and ideas and have a good time. They are relatively new in dementia care and usually have an open referral system.

 

·      Dementia advisors

Dementia advisors are people with experience in dementia care who can offer information, usually over the phone on aspects of dementia care. They can be a good source of information and can refer you on if necessary for specialist help. They are relatively new in dementia care and are not yet available in all areas.

 

·      Respite stays

Respite involves going into a residential home for a week or so to give your carer a break and give them the opportunity to re-charge their batteries. It also gives you the opportunity for social interaction and to take part in activities at the home. If you require assistance with personal care, the staff at the home will assist you. Look under council in the phonebook for this service, which is accessed via a social work needs assessment. You be asked about your finances and you will need to fulfill their eligibility criteria.

 

·      Continence problems

If you are having difficulties with wetting yourself, sudden urges to go to the toilet or leaking/dribbling, inform your GP who will investigate the problem and if necessary they can refer you to a continence nurse. There are many potential causes of continence problems, so it is important to get it checked out.

 

·      Memory Service (Memory Clinic) & Community Mental Health Teams – this includes nurses, occupational therapists, social workers,  psychiatrists, psychologists and support workers

You will probably already be familiar with staff from these services; particularly the Memory Service. However, as the dementia progresses, you may see staff from the community mental health team and they will support you in your home. They work with people with dementia all the time and have a vast experience in this area and can advise on strategies for dealing with difficult situations. These teams include mental health nurses, social workers, psychologists, occupational therapists and doctors.

 

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