Dementia is not a single disease, but a range of diseases. It affects brain function. This can result in difficulty with language, memory, personality, the way in which information is processed, and activities of daily living. The most common type of dementia is Alzheimer’s disease.

Issues common to people with dementia who require palliative care
Planning in advance
Advance care planning is a process that helps you to make decisions about your future health care. It is usually done in consultation with your healthcare providers, family members and other important people in your life. 

An Advance Care Plan, or Advance Directive, is one way of putting this plan into writing. It needs to be done when you are well, and before you can no longer make decisions for yourself.  A written Advance Care Plan can help those providing care for you to know what you want if you are no longer able to communicate your wishes. The paper Legal Planning and Dementia from Alzheimer’s Australia contains information about legal issues related to dementia. 

What happens as dementia progresses?
Dementia is a progressive condition, causing deterioration in people’s abilities. There is currently no cure for dementia. People with dementia will not always change in the same way, or at the same rate as each other. Most people in the later stages of dementia need total care, and usually receive this in a residential facility. Some families and carers care for the person at home, with an Extended Aged Care at Home Dementia Packages (EACH-D). 

In the late stages of dementia the following may occur:

• Failure to recognise close family members as a result of progressive memory loss
• Increased loss of physical abilities
• Increasing difficulty in understanding what is said or what is going on around them
• Loss of speech, or repeating a few words, or crying out from time to time
• Weight loss
• Difficulty swallowing
• Multiple infections.

Making treatment decisions
Patients in the later stages of dementia may become seriously ill. They may no longer be able to communicate their wishes. If they did not make any advance plans, a family member may be asked about giving or withholding different treatments such as tube feeding. It can be helpful to discuss these matters before the person becomes acutely sick so that you are aware of the options and decisions to be made.

Maintaining comfort at the end of life
As someone nears the end of life, the focus of care is to make sure they are comfortable and pain free. Health professionals have tools and guidelines they can use in assessing and managing pain for people with late stage dementia.

The actual death of a person with dementia may be caused by another condition. The person with dementia is likely to be frail towards the end. They will be less able to cope with infection and other physical problems because of the progress of dementia. In many cases death may be hastened by an acute illness such as pneumonia. Alzheimer’s Australia has more information about these issues. 

Resources

• National Dementia helpline Freecall: 1800 100 500  
  A 24 hour telephone information and support service available across Australia
• Dementia: supporting people with dementia and their carers 
  This  document has a section on palliative and end-of-life care
• Dementia – The Caring Experience 
  The carer information, stories and ideas in this book come directly from carers and service providers throughout Australia
• Carers Australia 
  Provides information about what support services are available for carers and how to access them
• Carer Resource Centres 
  Provide information and advice about the caring role, and about relevant carer services and entitlements. Carer Resource Centres can be contacted free of charge from anywhere in the country on Freecall: 1800 242 636
• Commonwealth Carer Respite Centres
  Can provide carers with a break (respite) when they are caring for someone at home

Alzheimer’s Australia produces a variety of resources including:

• Help sheet – Later stages of Dementia 
  A fact sheet which looks at issues to be considered for people with late stage dementia
• Palliative Care and Dementia 
  This paper sets out why palliative care can be important as death approaches; it describes how a person with dementia can be cared for with comfort and dignity
• Decision making in Advance Alzheimer’s 
  This paper gives information about advance directives. It addresses the issues associated with decision making before loss of competence for people with dementia
• Coping after the death of someone with dementia 
  A help sheet which discusses feeling that may be experienced when the person you are caring for dies. It suggests some ways to help deal with these feelings, and some practical ways to deal with the changes in your life.
• Late stage Alzheimer’s disease: a guide for carers 
  Tips and advice for looking after someone with late stage Alzheimer’s disease.

Websites

• Dementia Net 
  An online information service. It allows people with dementia and their carers to interact with others via online chat rooms. It also lets people keep a diary of their experiences which can be private, or shared with others. 
• The Dementia Advocacy and Support Network
  A worldwide organisation by and for those diagnosed with dementia, working together to improve quality of life.

Related CareSearch Pages
For Carers
Finding Services
Finding Out More

This page was created on 15 May 2008 and is due for review in May 2010