Dementia Explained

Dementia Explained

Dementia Explained

  • by Carolyn Frichot
  • May 24, 2021

Dementia is a serious loss of cognitive ability in a previously unimpaired person, beyond what might be expected from normal aging. It may be static, the result of a unique global brain injury, or progressive, resulting in long-term decline due to damage or disease in the body. Although dementia is far more common in the older population, it may occur in any stage of adulthood.

The onset of dementia is often very gradual but it does mean that a person’s abilities will deteriorate, sometimes rapidly over a few months, in other cases more slowly over a number of years until ‘advanced stage’ dementia is reached.

Dementia is a terminal condition and there is currently no cure. The fact that dementia will result in death is not easy to come to terms with and can often be a surprise to learn.

FAQs

What is an advanced care plan for Dementia?

Advance Care Planning means planning your care in advance of your condition worsening to the point where you are unable to make decisions for yourself.

It is how you take control of your future health care decisions and may help you to feel more positive about the future. The ability to decide what health care and health treatments we want is something we take for granted every day. However, there may come a time when illness makes us unable to make clear what we want from our health care providers.

If you are diagnosed with dementia – that time will certainly come.

In NSW there are a number of things that can be done in advance of such a time, so that your wishes can be respected by health care workers and your family or carers.

What does Palliative Care have to do with Dementia?

In advanced dementia there are treatments and supports available that can help keep people comfortable and free of pain and discomfort. This is known as Palliative Care. Palliative Care can be provided at hospital, at home and/or in a Residential Aged Care Facility.

Some people think that Palliative Care is only for people with cancer. This is not true. Palliative Care is available for anyone with any life-limiting illness, including dementia. Palliative Care can be provided at any stage as the dementia progresses, if it is needed. You can speak to the doctor about when a Palliative Care approach would be helpful and when a Palliative  Care Team should be involved.

Palliative Care is not only ‘for the very end’, in fact it can be better to talk to the Palliative Care team as soon as possible. The Palliative Care Team can provide advice on medical care including pain and symptom management. But it also provides specialised nursing care as well as spiritual or psychological support. A social worker can provide counselling and support to both patients and their family. They can work as part of a specialist Palliative Care team or may work alongside other health professionals in providing care in the community setting. They are specialists in helping with grief and offer bereavement services. In some larger hospitals there are physiotherapists, diversional therapists and other allied health services.

When should I start planning?

With advanced dementia a person will not have the capacity to give consent so if you are caring for someone with advanced dementia, you might be required to make treatment choices for them. If you know exactly what the person with dementia wanted, you will feel more confident about the decisions that you make on their behalf.

So the time for Advance Care Planning is now. If you have recently been diagnosed with Dementia or someone in your family has, there is no time to lose! You should consider completing an Advance Care Directive before the capacity to make decisions is lost. An Advance Care Directive will only be used when you are unable to make such decisions or are unable to communicate your preferences. If making an Advance Care Directive is too difficult at this time then the two most important things you can do are to appoint and Enduring Guardian, and to communicate your values and health care preferences to them.

Some important terms in Advance Care Planning

Enduring Guardianship

An enduring guardian is a person, over the age of 18 who agrees to be appointed by you to make personal and lifestyle decisions and/or medical treatment and health care decisions on your behalf, only when you are no longer able to do so for yourself. You may appoint more than one enduring guardian if you wish, and you may limit the functions of each one.

To appoint an enduring guardian you must do so in writing using an approved form. This is a legal document, and both you and your appointee need to sign the document in the presence of a NSW legal practitioner or a registrar of the local court. A fee may apply. In appointing an enduring guardian you need to help them to understand what your wishes, values and future care preferences are.

Advance Care Directives

In NSW an Advance Care Directive (or ACD) is a written statement completed by you informing others of your health care preferences. There is no set format, although several examples are available. Although there is no specific legislation for ACDs in NSW, the NSW Ministry of Health recognises ACDs as an extension of the individual’s right, under common law, to decline medical treatment. The ACD acts as your voice when you are no longer able to express your health care preferences directly. It is recommended that you discuss your thoughts about writing an ACD with an appropriate health professional who can assist you with understanding the health situations that may arise, and the possible treatment options available.

It is also recommended that you date your ACD, that you review it regularly, at least every year, and that you make copies available for your treating doctor, enduring guardian (if appointed), and that you take a copy with you if you are admitted to hospital.

Capacity

The ability to make your own decisions is called ‘capacity’. When you have the capacity you can make your own decisions about things that happen in your life. Generally when a person has capacity to make a decision they can:

  • understand the facts and choices
    involved;
  • weigh up the consequences; and
  • communicate the decision.

Substitute Decision Maker / ‘Person Responsible’

If you are no longer able to make health care decisions for yourself, NSW law provides that such decisions fall to the next Person Responsible. This may not be the same as the ‘next of kin’.

In order of appointment the Person Responsible will be:
1. A guardian or enduring guardian; or, if there is no guardian or enduring guardian;
2. The most recent spouse, de facto spouse or same sex partner with whom you have a close and continuing relationship; or, if there is no spouse, de facto spouse or same sex partner;
3. An unpaid carer who is now providing support to the patient or provided support before the patient entered residential care; or, if there is no carer;
4. A relative or friend who has a close personal relationship with the patient.

Please consider identifying your Person Responsible using this process, and discuss your health care wishes and preferences with them. They will then be able to speak for you in an informed way should the need arise.

DOWNLOAD

The Dementia Journey factsheet

National Framework for Advance Care Planning May 2021

National Framework for Advance Care Planning May 2021

29 June 21

The Framework builds on the National Framework for Advance Care Directives released in 2011 andreflects the many changes that have taken place in our landscape over the past 10 years. It has beendeveloped through extensive consultation with the Australian, state and territory health departments,health practitioners, universities, peak bodies and community organisations as well as public […]

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The extinction of life – Discussion Paper

The extinction of life – Discussion Paper

25 May 21

The purpose of this Discussion Paper is to: highlight Palliative Care NSW’s (PCNSW) concern about the confusion surrounding the legal obligation to report deaths to police where a doctor is not immediately available to certify the death of a palliative care patient dying at home; clarify the reporting obligations of health teams (doctors, nurses and […]

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Managing Pain

Managing Pain

25 May 21

Discomfort. Distress. Anxiety. We have all experienced pain that exhausts us and wears us down. It’s perfectly normal to be worried about how your pain will be eased. Persistent intense pain can eat away at us.You can expect the specialist Palliative Care team to take your pain very seriously – after all, it is what they […]

CONTINUE READING
National Framework for Advance Care Planning May 2021

National Framework for Advance Care Planning May 2021

29 June 21

The Framework builds on the National Framework for Advance Care Directives released in 2011 andreflects the many changes that have taken place in our landscape over the past 10 years. It has beendeveloped through extensive consultation with the Australian, state and territory health departments,health practitioners, universities, peak bodies and community organisations as well as public […]

CONTINUE READING
The extinction of life – Discussion Paper

The extinction of life – Discussion Paper

25 May 21

The purpose of this Discussion Paper is to: highlight Palliative Care NSW’s (PCNSW) concern about the confusion surrounding the legal obligation to report deaths to police where a doctor is not immediately available to certify the death of a palliative care patient dying at home; clarify the reporting obligations of health teams (doctors, nurses and […]

CONTINUE READING
Managing Pain

Managing Pain

25 May 21

Discomfort. Distress. Anxiety. We have all experienced pain that exhausts us and wears us down. It’s perfectly normal to be worried about how your pain will be eased. Persistent intense pain can eat away at us.You can expect the specialist Palliative Care team to take your pain very seriously – after all, it is what they […]

CONTINUE READING

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