In 2011 an estimated 298,000 Australians had a dementia and by 2050 this number is expected to triple.
People living with a diagnosis of dementia vary widely in their individual experience of symptoms and the progression of their condition.
Dementia is incorrectly thought of as a disease in its own right. Dementia is in fact a set of symptoms caused by several degenerative disorders.
Various stages and their descriptors have been developed in response to research and a better understanding of dementia. We now know the four most common types of dementia are:
• Alzheimer’s Dementia
• Vascular Dementia
• Dementia with Lewy bodies
• Frontotemporal Dementia (including Pick disease)
Less common is Creutzfeldt-Jakob Dementia and dementias associated with
Staging dementia provides a guide for clinicians in determining the focus for treatment. In addition staging also helps in optimising communication among the person with dementia initially, the carers and clinicians.
There are multiple versions of dementia scales which ultimately increases the risk for miscommunication among all parties. The individual dementia scales have been developed focusing on a symptom or group of symptoms and progression through each stage is relative to symptom deterioration.
Alzheimers Australia provides information to health professionals and consumers describing a classical phasing system of Early, Moderate and Advanced Dementia. This scale is based on symptoms associated with cognitive decline although people with dementia do not experience all the symptoms within each of the phases. Cognitive fluctuations make it difficult to articulate clearly at which phase the person is in.
The grouping of symptoms within a four stage framework is described by Dementia Care Australia. This model is based on a social psychology construct rather than a medical one which is based on brain changes.
Progression through the four stages is relative to how the person with dementia is responding and interacting socially within their environment. Research has shown little correlation between brain changes and the symptoms and deterioration experienced by individuals with dementia.
The Clinical Dementia Rating (CDR) scale describes five stages of dementia progression and is based on a persons ability to perform in six areas of function and cognition:orientation, memory, judgement, home and hobbies, personal care and community. Stages are rated as no impairment, questionable, mild, moderate and severe impairment.
A common seven stage scale in assessing primary degenerative dementia is the Global Deterioration Scale (GDS). The GDS focuses on the amount of memory decline and is more relevant and useful in Alzheimer’s Disease (AD). It’s not as useful in some of the other dementias such as frontotemporal dementia as memory loss does not always occur relative to the progression of the dementia.
The descriptive language utilised in the stages and phases of dementia is prolific:early onset, pre-Alzheimers, early, middle, late, mild, moderate, severe,advanced and end stage. Any wonder clinicians find it difficult in clearly communicating with one another and consumers regard the extent of the dementia.
Australian health expert Dr. Jane Tolman describes a dementia scale in her work in this specialised field of healthcare. The model can be used in all types of dementia and has the ability to clearly articulate for clinicians the progression of decline. Focus of care underpins this three stage model.
The first stage is Dignity and Autonomy and the primary focus of care is to maintain independence and enjoyment.
Goal of care in the second stage is about Safety and maintaining quality of life often requiring 24/7 care either in a residential aged care facility or extensive support at home.
Providing Comfort and Dignity is the third and final stage. Symptom management and ongoing reassessment of the need for medications and interventions prolonging life, investigations which do not aide comfort and avoiding hospital presentations is the focus of care.
Just as with other dementia scales progression and the rate of progress through the three stages are variable and individualistic for each person.
Tolmans’ dementia scale is ideal for use in nursing practice and should be considered for use in acute, sub/non-acute and community settings. The focus of care at each stage independence, safety and comfort provide a clear direction for nurses to plan with family/carers ongoing care management for the person with dementia.
Dementia is a progressive and degenerative condition. The focus of care throughout the person/carers dementia journey is to plan for the inevitable palliative aspects of this disorder.