Planning for your future care if you have dementia

Your future

You may want to take the opportunity to think about what living with a serious illness might mean for you, your partner, or your relatives. Particularly, if at some point in the future, you become unable to make or to communicate decisions for yourself. You may wish to record what your preferences and wishes for future care and treatment might be, or you may simply choose to do nothing at all.

One way of making people aware of your wishes is through advance care planning.

The Buckinghamshire Health Trust have an Advance Care Plan document that you can complete. If you wish to, ask your healthcare professional for the document.

Advance Care Planning

Advance Care Planning is a discussion between you and those who provide care for you, For example; your nurses, doctors, Care or Nursing Home Manager or family members.

During this discussion you can, if you wish, choose to express some views, preferences, and wishes about:

Advanced Decision to Refuse Treatment (ADRT): refusing specific treatment
Preferred Priorities for Care (PPC): identifying your wishes and preferences
Lasting Power of Attorney (LPA): appointing someone to make decisions for you
letting other people know your wishes

Advance Care Planning is an entirely voluntary process, and no-one is under any obligation to complete any of the plans. You may however, wish to choose to do some or all of them, explained in more detail below.

During an Advance Care Planning discussion, you may decide to express a very specific view about a particular medical treatment which you would never want to have. This can be done by making an Advance Decision to Refuse Treatment. (ADRT).

An Advance Decision to Refuse Treatment (known previously as a Living Will or Advance Directive) is a decision you can make now in order to refuse a specific type of treatment at any time in the future.

Sometimes you may want to refuse a treatment in some circumstances but not in others. If so, you must specify all the circumstances in which you want to refuse this particular treatment.

There are specific rules which apply if you wish to refuse treatment that is potentially life-sustaining, e.g. ventilation. An Advance Decision to refuse this type of treatment must be put in writing; signed and witnessed by an adult. If this is done, it becomes legally binding. However, an ADRT does not need to be drawn up by a Solicitor.

If you wish to make an ADRT, you are advised to discuss this with a Healthcare Professional who is fully aware of your medical history.

The wishes you express during Advance Care Planning are personal to you and can be about anything to do with your future care.

You may want to include your priorities and preferences for the future, for example:

how you might want any religious or spiritual beliefs you hold to be reflected in your care
the name of a person/people to be involved in decision-making if you are unable to make your wishes known
your choice about where you would like to be cared for, for example, at home, in a hospital, nursing home or a hospice
your thoughts on different treatments or types of care that you might be offered
how you like to do things, for example, preferring to shower instead of taking a bath, or sleeping with the light on
concerns or solutions about practical issues, for example, who will look after your pet when you become more unwell or are dying
if you wish to donate your organs after death

The Citizen's Advice Bureau can provide you with further support and information.

You may want to give another person the legal authority to make decisions on your behalf, should you become unable to do so yourself.

A Lasting Power of Attorney (LPA) enables you to give another person the right to make decisions about your property and affairs, and/or your medical welfare.

Decisions about care and treatment can only be covered by a Personal Welfare LPA.

An LPA covering your personal welfare will only be used when you lack the ability to make specific welfare decisions for yourself.

There are special rules about appointing an LPA. The form is obtainable from The Office of the Public Guardian (OPG), or from stationery shops which sell legal packs. The LPA must then be registered before it is effective and legally binding. This process takes some time and there is a fee.

If you have internet access, the government's website is also a good source of information.

Mental capacity

We are defining this as the ability to make and communicate decisions.

If you become unable to make and communicate decisions about your wishes the ADRT will be used. Your LPA, if they have authority to make decisions about your health, will be able to speak for you.

If there are no documents identifying your preference and wishes, your friends and family may be consulted about their knowledge of your preferences and wishes to guide the Healthcare Professionals who are looking after you. There is where your Advance Care Plan can be useful for your friends and family.

Resuscitation

When caring for a patient towards the end of their life, it is part of normal medical practice for your Healthcare Professional to have a conversation with the patient about resuscitation. This relates only to the instance of your heart or breathing stopping.

You will still be offered other treatments appropriate to your condition, even if a decision not to resuscitate you has been made.

Feel free to discuss this further with your GP/Doctor.

Infection prevention & control is important to the well-being of our patients and for that reason the trust has infection prevention and control procedures in place.

You will asked if anyone in the house have any symptoms of Covid and the healthcare professional will be wearing PPE while they visit you.

Further information

If you need advice or further assistance, contact the appropriate contact number

For BHT patient advice and liaison service (PALS), call 01296 316042 or email [email protected]
Regarding Florence Nightingale Hospice Care, call 01296 332600
Rennie Grove Hospice at Home teams contact the number you have been given
Care Advice Bucks - Support and care for adults, their families and carers.

Planning for your future care if you have dementia

Your future

Advance Care Planning

Refusing specific treatment

Identifying your wishes and preference

Appoint someone to make decisions for you - Lasting Power of Attorney (LPA)

Let other people know your wishes

Mental capacity

Resuscitation

Further information