- Taking control
- Prioritise your activities and play on your strength
- Living arrangements
- Financial and legal affairs
- Advance Care Planning
Planning for future and identifying ways to support independence are important factors in living with a chronic condition. Having a diagnosis of PCA will have an impact on most areas of your life. Many people find it beneficial to think about the future and about different issues and situations that might change due to a diagnosis of PCA.
Future planning will allow you and your family to have time to consider what is important for you, how you would like situations to be managed and who you would like to speak for you in case you will not be able to do so yourself. Everyone’s circumstances are different but most people benefit from considering the issues listed below. You may choose to take action on some of them but not on others, and perhaps revisit them later on. It is good to involve all those close to you in discussions about the future.
People living with long term conditions such as PCA will often see many
different health care and other professionals in different settings. It
is helpful to keep information about all the services and people
involved in your care easily accessible. The needs of the person
affected and their family change over time, as does the need for
information and support. It is useful to have a record of what has been
discussed, what information you have been given and what support you
have. This will make it easier to stay in control over the management of
your care and support.
Prioritise your activities and play on your strengths
Thinking about what is important to you and your family in your everyday life will help you to prioritise your activities. It will also help to identify where you may need assistance to support you. You may need to modify your activities according to your abilities.
Concentrate on your strengths, and continue with activities that you are able to do and that give you pleasure. It is useful to maintain routine as far as possible and let others help you where needed.
It is important to think about safety at home and any adaptations or changes that may need to take place. An occupational therapist (OT) can give advice and also suggest equipment to improve independence at home. An OT assessment can be arranged through community care assessment (see Support section below).
As the time goes on, you may need more help from other people to support your independence. You may wish to discuss different options such as arranging help at home and care homes in advance with those close to you.
Having a diagnosis of dementia does not necessarily mean a person cannot drive. Unfortunately, most people with PCA will have difficulties with driving very early on due to their visual difficulties. If you have been diagnosed with PCA you have a legal responsibility to inform the Driver and Vehicle Licensing Agency (DVLA) of the diagnosis. The driving insurance company should also be informed.
The Medical Advisory Branch of the DVLA decides whether you can continue to drive using the information provided by you and your GP or hospital consultant. Sometimes it may be necessary to take a free driving test conducted by the Driving Standards Agency.
If you are not able to drive there are other ways of getting around. Many people have found practical solutions such as allowing family and friends to help or arranging an account with a local taxi company.
Contact details for the DVLA
Drivers Medical Unit,
Tel. 0300 790 6806.
Or visit the DVLA website
Financial and legal affairs
Organising your financial and legal affairs will allow you to have peace of mind that all issues can be dealt with in the way you have chosen. Another important issue to consider is that people with PCA often have difficulties with their signature which can cause difficulties when dealing with legal and financial matters. You may wish to consider the following issues:
- Arrange bills to be paid by direct debit and benefits to be paid directly into the bank account
- Consider joint accounts
- Seek advice from a solicitor or financial adviser if needed (especially with complicated matters such as setting up a trust, etc.)
- Make sure you are receiving all the benefits to which you are entitled (please see the Benefits section)
- Make a will
- Consider arranging Lasting Power of Attorney (LPA)
LPA is a legal document which gives the person/persons you have chosen the right to make decisions for you on financial and/or health care matters in case you lose the capacity to make decisions yourself. You may choose to have only one or both LPAs
The LPA gives the person a choice of conferring broad or limited powers to the attorney to make decisions on their behalf, and a choice of who to appoint. For example, it is possible to appoint relatives to make welfare decisions, but a professional adviser for decisions relating to their property and affairs.
A property and affairs LPA gives the attorney(s) the power to make decisions about financial and property matters, such as selling a house or managing a bank account.
A personal welfare LPA gives the attorney(s) the power to make decisions about health and personal welfare, such as day-to-day care, medical treatment, or where the person should live.
A personal welfare LPA only ever takes effect when the donor lacks capacity to make decisions. A property and affairs LPA can take effect as soon as it is registered, even while the donor still has capacity, unless the donor specifies otherwise. The donor can, of course, specify that the attorney may only start managing their financial affairs after they lose capacity, some time in the future.
Further information on LPAs is available from the Office of the Public Guardian:
Office of the Public Guardian
2 Junction Road,
For Customer services phone: 0845 330 2900
Or visit the Office of the Public Guardian website
Advance Care Planning
Many people are concerned about how decisions about their medical treatment would be made if they lost the ability to decide themselves. Some people wish to think about future health care options in advance, some people do not.
Advance care planning is a dynamic process of discussions between you, those close to you and professionals providing care for you. During these discussions you may wish to express your views, preferences and wishes about your future care.
Advance care planning may take place at any time you feel is right for you. The process is entirely voluntary. The aim is to identify your wishes and preferences and ensure that people are aware of them. It is also possible to refuse a specific treatment. Some of the issues that are included in the advance care planning discussions are listed below.
Identifying wishes and preferences
You may have strong views about treatments or types of care you may be offered. Where you would be cared for might be important for you. For example you may wish to receive all care at home even if you become very unwell.
You may have spiritual or religious beliefs that you wish to be taken into account in your care. There may be practical things that are very important for you, for example you may prefer a shower to a bath. Or you may have concerns such as who would take care of your pets if you become unable to do so yourself.
You might wish to identify someone close to you to represent your views. This is different from Lasting Power of Attorney, as it is not legally binding, but the health and social care professionals are expected to take your views into account when planning your care. Sometimes it may not be realistic or practicable to follow your wishes.
It is not necessary to have your wishes and preferences written down, but it might be useful for those involved in your care if your views are in writing.
Refusing specific treatment
An advance decision to refuse treatment (previously known as a living will or advance directive) is a decision you can make to refuse a specific type of treatment at some point in the future. You may wish to refuse a treatment in some specific situations but not in others. It is important to specify the details of the circumstances.
There are specific rules if you wish to refuse a life sustaining treatment, such as ventilation. A decision to refuse treatment must be put in writing, signed and witnessed. If you wish to refuse a treatment you are advised to discuss this with an experienced care professional who knows your medical history well.