In the United States in 2012, 12.8% of patients admitted to hospice programmes had a primary diagnosis of dementia. Twenty-five years ago 90% of hospice patients had a cancer diagnosis. By 2012 this had dropped to 38.4% meaning that nearly 62% of hospice patients now have a non-cancer diagnosis (NHPCO, 2013). The focus of palliative care has been shifting for many years to non-cancer patients. This change simply reflects the reality that most people die of something other than cancer.
Projections are that US hospices will level out at about one-third cancer two-thirds non-cancer by 2020. In the last twenty years there has been an effort to extend hospice and palliative care to more people with advanced dementias. In 1996 the National Hospice and Palliative Care Organization published Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases: 2nd Edition.
This publication was intended to give guidance to hospices on what clinical findings should be considered when making a prognosis of six months or less, if the disease runs its normal course.
One of the eight diagnostic groups was dementia.The guidelines were essentially the same for Alzheimer’s and vascular dementias, while noting that vascular dementia appears to progress to death more quickly.
The guidelines contained many caveats but essentially suggested that people with dementia be at stage 7c or greater on the Functional Assessment Staging (FAST) scale (Reisberg, 1994).
This meant inability to walk, bathe or dress without assistance, the presence of urinary and fecal incontinence, and inability to speak or communicate meaningfully.
A number of problems with the predictive validity of the FAST scale have been noted meaning that this is not a reliable way to determine prognosis, however all these factors should be considered when making a prognosis as well as the presence of common medical complications including co-morbid conditions and difficulty eating.
When hospice and palliative care providers began to care for people with dementia there was prejudice against the practice. Government officials would say things like ‘what’s the point of serving them, they can’t even communicate?’
Hospice advocates responded with education about the heavy care burdens that people with dementia and their families experience, the need for more personal care and attention to feeding, the need for family respite, and the inherent fact that someone with dementia was still a person with dignity.
Over time the apparent need for palliative care for people with dementia has become more accepted. Surprisingly only recently was it acknowledged that dementia itself is a cause of death (Mitchell et al, 2009). Globally dementia is growing along with the ageing of the population.
The World Health Organization estimates that 676,000 people died from Alzheimer’s and other dementias in 2011 (WHO, 2013).
This number will rise dramatically in the decades ahead and will require increasingly more palliative care services. To meet this need we need to expand training for health care workers globally in the basics of palliative care and dementia and to have health professionals with advanced skills in caring for those suffering from dementia and their families.
Clearly there is a need for greater cooperation between hospice palliative care workers, and the greater health care system. Not every person with dementia may need a specialised palliative care programme. We need to do a better job of ensuring that all health care workers receive training in the basics of palliative care so that reliable palliative care is available in every setting where people with dementia receive care, especially in long term care. Many families want to be able to care for their loved one at home. Hospice palliative care is especially helpful in supporting families to provide this care at home. However the current system for hospice in the USA limits care to the final six months of life, which is noted to be difficult to predict, particularly in dementia. Families need care over a long haul if they are to succeed in avoiding nursing home care. What is needed is a more flexible care management system of long-term care in the home that utilizes rehabilitative as well as palliative support. People with dementia and their families deserve no less.
Leave a Reply