Planning for the future

To download this document- Planning for the future

 

By planning for the future, you will be able to make decisions about your care in advance. This involves letting people know your wishes, enlisting the help and support of others and putting your affairs in order. This is a list of things to consider when you do this:

 

·         Speak to people you trust.

      This has been mentioned several times in this document but it is important to discuss your feelings and concerns with people you trust, such as your family and friends. They will be able to support you in making these important decisions or help you find professional assistance. If you choose to see people like solicitors for advice, it is still advisable to take someone you trust with you, as they will prompt you to discuss important issues for you and help you remember the outcome of the meeting.

 

·         Consider making a will.

      Everyone should make a will. A will makes sure that when someone dies, their money and possessions go to the people they have chosen. It is important to make a will as early as possible after diagnosis. With a diagnosis of dementia, you can only make a will when you are said to have, 'testamentary capacity'. In other words, the mental capacity to make or change wills. Where there is doubt, a solicitor may require a medical opinion on testamentary capacity. Mental capacity is assumed and where there is doubt, the assessing doctor should address the question: "Is it more probable than not that this person lacks or has testamentary capacity?" This assessment would be specifically for this decision. Capacity for other decisions would have to be assessed separately.

 

·         Mental capacity.

      The Social Care Institute for Excellence’s publication on mental capacity explains about the Mental Capacity Act (2005) and how this affects people diagnosed with dementia. ‘The Mental Capacity Act (MCA) is underpinned by five key principles:

 

A presumption of capacity – every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. This means that you cannot assume that someone cannot make a decision for themselves just because they have a particular medical condition or disability.

 

Individuals being supported to make their own decisions – a person must be given all practicable help before anyone treats them as not being able to make their own decisions. This means you should make every effort to encourage and support people to make the decision for themselves. If lack of capacity is established, it is still important that you involve the person as far as possible in making decisions.

 

Unwise decisions – people have the right to make decisions that others might regard as unwise or eccentric. You cannot treat someone as lacking capacity for this reason. Everyone has their own values, beliefs and preferences which may not be the same as those of other people.

 

Best interests – If a person has been assessed as lacking capacity then any action taken, or any decision made for or on behalf of that person, must be made in his or her best interests. The  person who has to make the decision is known as the ‘decision-maker’ and normally will be the carer responsible for the day-to-day care, or a professional such as a doctor, nurse or social worker where decisions about treatment, care arrangements or accommodation need to be made. 

 

Less restrictive option – someone making a decision or acting on behalf of a person who lacks capacity must consider whether it is possible to decide or act in a way that would interfere less with the person’s rights and freedoms of action, or whether there is a need to decide or act at all. Any intervention should be weighed up in the particular circumstances of the case. 

 

When should capacity be assessed? - You might need to assess capacity where a person is unable to make a particular decision at a particular time because their mind or brain is affected by illness or disability. Lack of capacity may not be a permanent condition.  Assessments of capacity should be time and decision specific. You cannot decide that someone lacks capacity based upon age, appearance, condition or behaviour alone.

 

Two-stage functional test of capacity - In order to decide whether an individual has the capacity to make a particular decision you must answer two questions:

 

Stage 1: Is there an impairment of or disturbance in the functioning of a person’s mind or brain? If so,

Stage 2: Is the impairment or disturbance sufficient that the person lacks the capacity to make a particular decision? 

 

The MCA says that a person is unable to make their own decision if they cannot do one or more of the following four things:

 

  1.     1. understand information given to them

2. retain that information long enough to be able to make the decision

3. weigh up the information available to make the decision

4. communicate their decision – this could be by talking, using sign language or even simple muscle   

    movements such as blinking an eye or squeezing a hand.

 

Every effort should be made to find ways of communicating with someone before deciding that they lack capacity to make a decision based solely on their inability to communicate. Also, you will need to involve family, friends, carers or other professionals.The assessment must be made on the balance of probabilities – is it more likely than not that the person lacks capacity? You should be able to show in your records why you have come to your conclusion that capacity is lacking for the particular decision. For further reading on the Mental Capacity Act (2005) go to:   http://www.scie.org.uk/adults/mentalcapacity.asp

 

·         Work.

      If you are still in work, be aware that in time, dementia will make you less able to do your job. In fact you will eventually have to give up your job. However, there may be options you could discuss with your employer such as, shorter hours, a simpler job or early retirement. Having someone with you for these discussions is advisable.Now would be a good time to look into what pension you would be entitled to and any other benefits you could apply for when you give up work.

 

·         Driving.

      Dementia will affect your ability to drive and at some point you will have to give up driving. However, some people are able to still drive for a period of time after diagnosis; particularly if diagnosed early.Dementia is a condition that you need to tell the Driver and Vehicle Licensing Agency (DVLA) about. The law requires you to tell the Driver and Vehicle Licensing Agency (DVLA) about any condition that may affect your ability to drive safely. If you are involved in an accident and it is found that you having dementia was a contributing factor, you may be prosecuted, fined up to £1000 and your insurance may not be valid. See the back of your driving license where this is clearly stated! The Driving Assessment Centre has lots of information on driving with medical conditions and on the driving skills assessment process.

 

      Download and complete this medical questionnaire:
http://www.direct.gov.uk/prod_consum_dg/groups/dg_digitalassets/@dg/@en/

      @motor/documents/digitalasset/dg_171291.pdf


and send it to:

 

      Drivers Medical Group,

      DVLA, Swansea,

      SA99 1DF

 

      or fax it to: 0845 850 0095

 

      The DVLA may ask your GP and your hospital specialist about your fitness to drive. Your GP and hospital specialist have to give an honest opinion, based on the guidance issued to them and have a duty to report drivers who may be unfit to drive. Whilst GPs and hospital specialists never like recommending people give up their driving license, they have a duty of care to all road users and pedestrians and must consider this when giving an opinion on your ability to drive. This is not a reflection on you as a driver but the way in which dementia affects your ability to drive. The guidance below is for car and motorcycle users only. Those drivers with VOC – LGV/PCV will have their license revoked immediately.

 

Guidance from the DVLA for Professionals:

It is extremely difficult to assess driving ability in those with dementia. Those who have poor short-term memory, disorientation, lack of insight and judgement are almost certainly not fit to drive. The variable presentations and rates of progression are acknowledged. Disorders of attention will also cause impairment. A decision regarding fitness to drive is usually based on medical reports. In early dementia when sufficient skills are retained and progression is slow, a licence may be issued subject to annual review. A formal driving assessment may be necessary.

 

·         Lasting powers of attorney.

      The Office of the Public Guardian offers useful advice on lasting powers of attorney (LPAs) written below:

     

      An LPA is a legal document that you (the Donor) make using a special form. It allows you to choose someone now (the Attorney) that you trust to make decisions on your behalf about things such as your property and financial affairs or health welfare at a time in the future when you no longer wish to make those decisions or you may lack the mental capacity to make those decisions yourself.

An LPA can only be used after it is registered with the OPG.

The types of LPA. There are two different types of LPA:

 

Health and Welfare Lasting Power of Attorney.

A health and welfare Lasting Power of Attorney (LPA) allows you to plan ahead by choosing one or more people to make decisions on your behalf regarding your personal healthcare and welfare. These health and welfare decisions can only be taken by somebody else when you lack the capacity to make them for yourself; for example if you are unconscious or because of the onset of a condition such as dementia.The Attorney(s) you appoint to make personal welfare decisions will only be able to use this power once the LPA has been registered and provided that you cannot make the required decision for yourself. You can decide to give your Attorney the power to make decisions about any or all of your health and welfare matters. This could involve some significant decisions, such as:

 

  ü  giving or refusing consent to particular types of health care, including medical treatment decisions; or

  ü  whether you continue to live in your own home, perhaps with help and support from social services, or   

          whether residential care would be more appropriate for you.

 

If you want your Attorney(s) to have the power to make decisions about ‘life-sustaining treatment’, you have to expressly give your  chosen Attorney(s)  the power to make such decisions by choosing either option A or Option B in section 5 of the health and welfare LPA form.You can also give your Attorney(s) the power to make decisions about day-to-day aspects of your personal welfare, such as your diet, your dress, or your daily routine. It is up to you which of these decisions you want to allow your Attorney to make.This type of LPA does not allow the person(s) you have chosen (your Attorney) to make decisions about your property and financial affairs.  If you would like someone to be able to make property and financial affairs decisions on your behalf you will need to make a property and financial affairs Lasting Power of Attorney.

 

A property and financial affairs Lasting Power of Attorney (LPA) allows you to plan ahead by choosing one or more people to make decisions on your behalf regarding your property and financial affairs. You can appoint a property and financial affairs Attorney to manage your finances and property whilst you still have capacity as well as when you lack capacity. For example, it may be easier for you to give someone the power to carry out tasks such as paying your bills or collecting your benefits or other income. This might be easier for lots of reasons: you might find it difficult to get about or to talk on the telephone, or you might be out of the country for long periods of time. You can decide to give your Attorney(s) the power to make decisions about any or all of your property and financial affairs matters. This could include paying your bills, collecting your benefits or selling your house. This type of LPA does not allow the person(s) you have chosen (your Attorney) to make decisions about your personal welfare.  If you want someone to be able to make health and welfare decisions on your behalf you will need to make a Health and Welfare Lasting Power of Attorney.

 

Who can make an LPA? Anyone aged 18 or over, with the capacity to do so, can make an LPA appointing one or more Attorneys to make decisions on their behalf. You cannot make an LPA jointly with another person; each person must make his or her own LPA.

 

People involved in making an LPA. The following are the different people involved in making an LPA:

  ü  The Attorney(s). An Attorney is the person(s) you choose and appoint, using an LPA form, to make  

          decisions on your behalf about either your health and welfare or property and financial affairs or both.  It is

          an important role and one that the person chosen has to agree to take on.

  ü  Donor. A Donor is someone who makes an LPA appointing an Attorney(s) to make decisions

          about his/her health and welfare, property and financial affairs or both.

  ü  Named person(s).  A named person is someone chosen by the Donor to be notified when an application is

          made to register their LPA. They have the right to object to the registration of the LPA if they have

          concerns about the registration. The named person(s) are specified in the LPA form. Selecting people to

           notify of an application to register is one of the key safeguards to protect you if you make an LPA.

  ü  Certificate provider. A certificate provider is a person the Donor must select to complete a Part B 

          Certificate in the LPA form. The certificate provide must confirm that the Donor understands the LPA and

           that the Donor is not under any pressure to make it. The certificate provider is another important

           safeguard.

  ü  Witness. A witness is someone who signs the LPA form to confirm that they witnessed:

      o                                 the Donor (the person making the LPA) signing and dating the LPA form; or

      o                                 the Attorney(s) (the person appointed by the Donor) signing and dating the LPA

                              form.        

               

It is an important role and acts as a further safeguard. More information can be obtained from their website including application packs: http://www.publicguardian.gov.uk/index.htm

 

·         Medical arrangements.

      This includes living wills, advanced decisions to refuse treatment and preferred priorities of care. By thinking about these things as soon as possible after first diagnosis, you will be able to say what healthcare you would like to have or not to have in the future.People often have strong views about this, so it is important to write these views down and discuss your wishes with your friends, family and your GP. The government produces guidance on living wills detailed below: You can use an advance decision (also called advance directive) to indicate your wish to refuse all or some forms of medical treatment if you lose mental capacity in the future. You can't use it to request treatment.A valid advance decision has the same effect as a refusal of treatment by a person with capacity: the treatment cannot lawfully be given - if it were the doctor might face civil liability or criminal prosecution.

 

Limitations on advanced decisions

You can't use an advance decision to:

  ü  ask for your life to be ended

  ü  force doctors to act against their professional judgment

  ü  nominate someone else to decide about treatment on your behalf

 

As with advance statements, bear in mind that new drugs or treatments may be introduced in the future so you may wish to allow for new treatments even if refusing a current one.

 

Does an advance decision have to be in writing?

An advance decision doesn't all have to be in writing. However, although witnessed verbal instructions may be respected, it's best to make them known to a senior member of a medical team. A written decision helps to avoid any doubt about what you wish to refuse. In any case, since April 2007 some aspects of advance decisions have to be in writing.

 

You should sign, date and have witnessed a written advance decision in the same way as for an advance statement. A written advance decision could form part of a general advance statement, but it is clearest if it sits under a distinct heading, ideally 'Advance decision' or 'Advance directive, refusing treatment'.

 

Regulations of advanced decisions from April 2007

The Mental Capacity Act 2005 came into force in April 2007 and forms the legal basis for advance decisions.

 

Valid advance decisions

To be valid an advance decision needs to:

 

  ü  be made by a person who is 18 or over and has the capacity to make it

  ü  specify the treatment to be refused (it can do this in lay terms)

  ü  specify the circumstances in which this refusal would apply

  ü  not have been made under the influence or harassment of anyone else

  ü  not have been modified verbally or in writing since it was made

 

Refusal of life-sustaining treatment

Advance decisions refusing life-sustaining treatment must:

 

  ü  be in writing (it can be written by a family member, recorded in medical notes by a doctor or on an   

           electronic record)

  ü  be signed and witnessed (it can be signed by someone else at the persons direction - the witness is to

           confirm the signature not the content of the advance directive)

  ü  include an express statement that the decision stands 'even if life is at risk'

   

When might an advance decision not be followed?

A doctor might not act on an advance decision if:

 

  ü  the person has done anything clearly inconsistent with the advance decision which affects its validity (for

           example, a change in religious faith)

  ü  the current circumstances would not have been anticipated by the person and would have affected their

          decision (for example, a recent development in treatment that radically changes the outlook for their

          particular condition)

  ü  it is not clear about what should happen

  ü  the person has been treated under the Mental Health Act

 

A doctor can also treat if there is doubt or a dispute about the validity of an advance decision and the case has been referred to the court.

 

Age Concern (Age UK) has produced a leaflet giving further guidance on living wills and advanced directives which can be downloaded here: http://www.ageconcern.org.uk/AgeConcern/fs72-advance-decisions-wills.asp

 

Preferred priorities of care

The National End of Life Programme is an NHS organisation charged with improving the end of life for people. Below you will find information from them on this programme and a document to download:

This patient held document was designed to facilitate patient choice in relation to end of life issues. Through good communication and by documenting patient and carers choices, they become empowered through the sharing of this information with all professionals involved in their care. The PPC document provides the opportunity to discuss difficult issues that may not otherwise be addressed to the detriment of patient care. The explicit recording of patients/carers wishes can form the basis of care planning in multi-disciplinary teams and other services, minimising inappropriate admissions and interventions.

 

The PPC also records services available, services being accessed and reasons for changes in the care trajectory. PPC is a process, which facilitates service review, further empowering professionals to negotiate service requirements on the behalf of patients, becoming an integral part of service commissioning and design. Download the document here: http://www.endoflifecareforadults.nhs.uk/assets/downloads/ppc_1.pdf

 

·      Living arrangements

When first suspecting a diagnosis of dementia, people often put off going to see their GP because they are concerned than once a diagnosis is established, they will be taken into care. In fact quite the opposite is true. Every effort is made to enable people to stay living in their own home with services being offered to facilitate this independence. However, there may come a time when you feel unable to continue living alone. Below is a summary of some of the options available to people.

 

Live in carer

Live in carers can help people to stay living in their own home. Essentially, the carer lives with you and helps you with your daily living activities such as washing, dressing, preparing and cooking food and maintaining your safety. The drawback is that this is a very costly way of caring for someone and is usually more expensive than residential care.

 

Living with family

Whilst this may seem an attractive proposition, it has many pitfalls. For example, it puts a tremendous strain on relationships between the family you are moving in with as well as the relationship between you and the family who would be your carers. This is a very different relationship to the one you would have always enjoyed with them and so both you and they should think very carefully before making this move. It could also affect finances if some of your money is used to buy a larger house suitable for all of you and then you later have to move into residential care because this move has not worked out.

 

Residential care

Residential homes are places where people usually have their own room and often en suite facilities also.  There are shared living rooms, dining rooms and bathrooms. The benefit is that other people do the washing up, cleaning and cooking! There are people around to socialise with and someone to keep an eye on you in case you should become unwell and to keep you safe. Some of these homes specialise in the care of people with dementia.

 

Lists of residential or care homes as they are sometimes called can be obtained from the Care Quality Commission who has a duty to inspect these homes. Their website is: http://www.cqc.org.uk/

 

Access to care homes depends on need and finances. People who need assistance with funding for care homes, must do so with the help of a social worker and will have to fulfill the criteria. People who are funding the care home themselves, can make arrangements directly with the home.

 

Nursing care

Nursing care is very similar to residential care but it is for people who have nursing needs. This is because their dementia has progressed to a level which is beyond what residential care can manage or that there are medical conditions which require regular nursing interventions which can only be delivered in a nursing home environment. As the name implies, nursing homes have qualified nurses on duty at all times. Some of these homes specialise in the care of people with dementia.

 

Lists of nursing homes can be obtained from the Care Quality Commission who has a duty to inspect these homes. Their website is: http://www.cqc.org.uk/

 

Some of the costs of funding nursing care could be made by the NHS, following a nursing assessment.

 

NHS Continuing Health Care

NHS Choices publish the following information:

 

NHS continuing healthcare means a package of care that is arranged and funded by the NHS and is free of charge to the person receiving the care. This is sometimes called fully funded NHS care.

 

Primary care trusts (who manage local health services) are required to carry out an assessment for NHS continuing healthcare where health services might be needed.  A checklist is commonly used to decide whether someone needs a full assessment. Some people who need an urgent decision, such as those who are terminally ill, should be fast-tracked to receive NHS continuing healthcare immediately.

 

Where is NHS continuing healthcare offered?

NHS continuing healthcare can be provided by the NHS in any setting, including a care home, hospice, hospital or the home of the person you look after. If NHS continuing healthcare is provided in a care home, it will cover the care home fees, including the cost of accommodation, personal care and healthcare costs. If NHS continuing care is provided in the home of the person you look after, it will cover personal care and healthcare costs.

 

Responsibilities of social services

If NHS continuing healthcare is provided at the home of the person you look after, local social services may still have responsibilities to provide some services for you and the person you're looking after. It is possible to receive 'mixed' packages of care, where some services come from the NHS and some from social services.

Where local social services provide the care services, it will usually do a financial assessment to decide whether the person you look after must make any financial contribution.

 

Who qualifies?

The person being assessed should have a comprehensive assessment by any of a range of the healthcare professionals involved in their care. There should be clearly identified professionals who will co-ordinate the process.

 

The team will consider each of the healthcare needs of the person you're looking after. These are:

  ü  behaviour,

  ü  cognition (understanding),

  ü  communication,

  ü  psychological/emotional needs,

  ü  mobility,

  ü  nutrition (food and drink),

  ü  continence,

  ü  skin (including wounds and ulcers),

  ü  breathing,

  ü  symptom control through drug therapies and medication, and

  ü  altered states of consciousness.

 

Those carrying out the assessment should look at what help is needed, how complex these needs are, how intense and unpredictable these needs can be, as well as any risks that would exist if adequate care was not provided. For each of these issues a decision is then made about the level of need. The levels are 'priority', 'severe', 'high', 'moderate' or 'low'.

 

Your own views and those of the person you're looking after should also be taken into account when the assessment is carried out.

 

If the person you're looking after has priority needs in particular areas or severe needs in at least two, then NHS continuing healthcare should be provided. Someone can also qualify for NHS continuing care if they have a severe need in one area plus a number of other needs, or a number of high or moderate needs. In these cases the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.

 

Review

A case review should be carried out three months after the original decision, even if the person you're looking after did not receive a full assessment. Following that first review, further reviews should be carried out at least every year.

 

Age UK publish guidance on care homes and the costs involved, which can be downloaded here: http://www.ageuk.org.uk/health-wellbeing/doctors-hospitals/nhs-continuing-healthcare-and-nhs-funded-nursing-care/

 

·      Paying bills

If you have not set up direct debits or standing orders for all of your usual bills, now is a good time to do this. Ask your friends, family or Citizens Advice to help you do this. It will mean that you do not have to worry about your bills being paid on time and you won’t forget to pay any of them. Direct debits or standing orders can easily be altered if necessary.