Saturday, October 17, 2009

Dementia and health care

A new study has come out about dementia patients and end of life care. As the authors say,

"The clinical course of nursing home residents with advanced dementia has not been well described."

The Clinical Course of Advanced Dementia
 This study followed 323 nursing home residents with advanced dementia in 22 nursing homes. 
  • Data was collected on clinical complications, symptoms, and treatments.
  • The mean age of the group was 85
  • Patients had been in nursing home care for a median of three years.
    Dementia was related to
    • vascular insufficiency in 17% of the patients (e.g., my Dad had a brain tumour that caused his dementia, but inadequate blood supply to the brain)
    • to Alzheimer's disease in 72% of these cases. 
    • Symptoms in the remainder had other causes.
Over a period of 18 months, 54.8% of the residents died.  
  • Probability of pneumonia was 41.1%; 
  • A febrile episode: 52.6%;  (A febrile episode is a seizure due to a fever.)
  • Eating problems, 85.8%. 
After adjustment for age, sex, and disease duration,
  • the 6-month mortality rate pneumonia was 46.7%; 
  • a febrile episode, 44.5%;
  • an eating problem, 38.6%. 
  • Distressing symptoms, including dyspnea, or shortness of breath (46.0%) and pain (39.1%), were common. 
  • In the last 3 months of life, 40.7% of residents underwent at least one: hospitalization, emergency room visit, parenteral therapy (intravenous or intramuscular injection), or tube feeding. 
Much has been written about quality of life, palliative, and end-of-life care. Little filters down to caregiver, front line staff except those in specialty units, and big hospitals. It is important that caregivers, those with power of attorney, remain vigilant in determining that their loved ones are not facing extreme interventions, when it prolongs a difficult life.

In this article, Infections, Eating Problems Signal The End in Advanced Dementia, they say,
"although earlier studies had suggested that pneumonia and other infections, fractures, eating problems, and agitation are common in advanced dementia, they were not as rigorous as the current study."
They point out that caregivers must be vigilant. Extreme interventions are disabling, rather than enabling. And I agree. Those with dementia are practically force fed. They are forced, in many institutions, to get out of bed, to have physiotherapy, or their diets consist of bland, low cholesterol foods that they may never have liked, all with the mindset of prolonging life. They experience polypharmacy, in which they receive medications that determine their quality of life.

It is up to caregivers and Alternate Decision Makers, to advocate. My Dad, who loved his eggs, was refused an egg on a daily basis. What were they thinking? He was declared palliative at that point. He wanted an egg.

My Dad, whose brain tumour caused balance issues, and who had fatigue, would beg us to put him back into bed. It took time to find two staff members to do this. We could not lift him, and it was dangerous to do so. He was better served by being allowed to rest, and sleep. We avoided falls by having him in a reclining wheel chair, but they needed to be rented. They wanted to give him physiotherapy, to better help him get in and out of bed and his wheelchair, but we said we didn't think his care staff were best to be fighting with a man who was immobile and angry. He hit staff once, that I heard of. He was angry, a symptom not well-broadcast about dementia. He was frustrated, and did not know why his body was failing him.  None of the theatre, movies, and few books,  present this aspect of dementia. The studies available only to medical practitioners, and not to caregivers.

We need more dialogue, and better advocacy for caregivers, as much as for patients. Be aware. Ask questions. Demand the truth.

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