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Dementia: decision making journey

Dementia: decision making journey

What is dementia?

Dementia is a group of diseases that cause a permanent decline of a person's ability to think, reason and manage their own life.

What is the Residential Aged Care Integration Programme?

Value: With CompassionThe Residential Aged Care Integration Programme is a collaboration between Waitemata DHB and residential aged care facilities. A team of gerontology nurse specialists and wound care nurse specialists provide clinical advice and support to staff in facilities through education, comprehensive assessment of residents, and liaising across services to improve quality of care and quality of life for people with complex conditions living in residential aged care.

The Residential Aged Care Integration Programme work group meets regularly to discuss on clinical problems and solutions, develop resources and discuss current developments that impact residential aged care services.

What are we trying to achieve?

The Residential Aged Care Integration Programme working group identified a need for staff in residential aged care to have a resource to use as a discussion tool with families of dementia patients.  Many families did not understand terminal nature of dementia. 

The aim was to develop a resource to introduce the topic of advance care planning to family members of people moving into residential care with a diagnosis of dementia. The resource would:

  • introduce the idea that dementia is a terminal illness and that decisions will need to be made as a person deteriorates
  • use the knowledge and skills of the aged care workforce to help design the resource
  • help reduce unnecessary hospital admissions

What have we done?Dementia: Decision-Making Journey Brochure

The work group developed a pamphlet to introduce the topic of dementia and advance care planning, and a booklet with more detailed information.

Experts in the field and consumers worked with the work group to develop these resources.

These resources are now available for all staff and families and are published on our website.

[click on brochure to download a copy]


Dementia Brochure content

The "Dementia Decision Making Journey: where to from here?" pamphlet assists family members to understand that:

  • dementia is a progressive, degenerative disease
  • advance Care Plans enables the values and preferences of the person with dementia to be taken into consideration when making decisions about care options
  • the health care team at the facility will discuss options for care with family  

Where to from here?

We are following up the "Dementia Decision Making Journey" pamphlet  with a booklet designed to answer questions commonly asked by families as their family member deteriorates.  It too has a palliative approach and encourages advance care planning.  Some examples of questions include:

  • What can be done when a person with dementia becomes reluctant to eat or drink?
    This is a commonly asked question as a person’s need for food and fluid decreases towards end of life and they don’t feel hungry or thirsty.  Families often do not understand that invasive interventions such as feeding tubes do not prolong life.
  • When is admission to hospital appropriate?
    This is important for families to understand and to think about in advance of such an event happening.  It is important for families to understand that admission to hospital can be beneficial if a patient’s quality of life is increased.  One of the factors to consider is whether a health issue is reversible, for example a fracture; or is not reversible, for example the patient has declining mobility due to dementia.

Winner in "Excellence in compassionate patient support care" category for Waitemata Health Excellence Awards 2012