When to Consider Palliative Care/Hospice for Patients with Advanced Dementia

Written by: Scott Endsley, MD, MSc., Associate Medical Director for Quality

Dementia is a terminal illness, like cancer or advanced heart disease. Dementia is rapidly increasing in the U.S. and worldwide. In 2012, there were over 5.2 million Americans with Alzheimer’s Disease (AD). By 2025, the number is expected to grow by almost 30% to 6.7 million.[1] Along with the prevalence expanding at epidemic proportions, mortality also continues to increase. It is the 5th leading cause of death in the U.S.[2]

Dementia is a progressive disease with seven stages (figure 1). Alzheimer’s Disease may last for decades, though the mean in eight years. The Global Deterioration Scale[3] is a validated instrument that is helpful in staging the patient along the progression timeline. Memory and function loss proceeds inexorably across the stages until Stage 7 in which the patient has very limited words, incontinence, severe function loss requiring assistance for ADLs, and total disorientation. Median survival in Stage 7 is 1.3 years. Over 80% of patients in this stage have significant eating problems, often requiring assistance. Resultant weight loss is common. Infections, primarily pneumonia and urinary tract infections, are common and carry a high risk of mortality (40% or greater in the CASCADE study[4])

Palliative care is appropriate at any point after diagnosis and may be provided along with symptom management as early as Stage 2. Caregivers and providers are often confronted with the agonizing decision of anticipating death and entering the patient into hospice. Prognostication in advanced dementia is a problematic endeavor. The ADEPT tool has been developed to assist in predicting survival based upon eleven variables in demographics, cognitive status, functional status, active diagnoses. Risk scores greater than 16 (scale 1-32) suggests a six month probability of dying of > 50%. The Medicare Hospice guidelines requires the patient to have significant functional limitation (Stage 7 or beyond of Functional Assessment Staging (FAST) scale) AND at least one of six medical complications in the preceding year including aspiration pneumonia, pyelonephritis, septicemia, multiple decubitus ulcer, recurrent fevers after antibiotics, or inadequate hydration and caloric intake with 10% body weight during previous 6 months (or serum albumin less than 2.5 g/dl). When compared to the ADEPT prognostic tool, the Medicare Hospice guidelines perform less reliability in predicting 6 month mortality.

seven stages of dementia

Recommendations. As your patients with dementia of any type (Alzheimer, vascular, Lewy body) progress through the seven stages, consider the following:

  • Educate caregivers on the nature of dementia as a progressive and ultimately fatal disease
  • Initiate advance care planning conversations early (stage 1 or 2)
  • Ensure that a surrogate has been identified to medical decision making
  • Start palliative care in addition to other medical care early or at least by Stage 5 or 6.
  • Manage symptoms (neuropsychiatric, incontinence, insomnia) appropriately
  • Recommend caregiver assistance early to avoid burn-out and depression
  • Consider hospice evaluation at Stage 7


Resources. Many dementia management resources are available. Consult these as needed.

Alzheimer Association: www.alz.org

National Institute for Aging: www.nia.nih.gov/health/alzheimers-dementia-resources-for-professionals

National Hospice and Palliative Care Organization:  www.nhpco.org/resources-access-outreach/dementia-resources

[1] Alzheimer’s Association. 2012 Alzheimer’s disease facts and figures, accessed at: www.alz.org/downloads/facts_figures_20122.pdf

[2] Tejada-Vera B. “Mortality from Alzheimer’s disease in the United States. NCHS Data Brief. National Center for Health Statistics, Hyattsville, MD 2013

[3] Reisberg B, Ferris SH, de Leon JJ, Crook T. “The Global Deterioration Scale for assessment of primary degenerative dementia”. Am  J. Psychiatry (1982), 139: 1136

[4] Mitchell SL, Teno JM, Kiely DK et al. “The Clinical Course of Advanced Dementia”, NEJM, (2009), 361:1529

Putting Trauma Informed Care into Practice – Part 1

By Karen Stephen, Ph.D., PHC Mental Health Clinical Director

Part I:  Implementing Trauma-Informed Care in Pediatric and Adult Primary Care Settings  (Nadine Burke-Harris MD Center for Youth Wellness and Edward Machtinger MD, Women’s HIV Program UCSF)

Link to audio of entire webinar session: https://www.youtube.com/watch?v=VbqwJ1h1Qy8&feature=youtu.be

Definition of trauma: Event or series of events, or set of circumstances that are experienced by the individual as physically or emotionally harmful or life threatening that can have lasting effects on the individual’s mental, physical, social, emotional, or spiritual well-being.

Types of Adverse Childhood Experiences (ACEs)

  • Abuse: Physical, emotional, and sexual
  • Neglect: Physical, emotional
  • Household Dysfunction: Mental illness, mother treated violently, divorce, incarcerated relative, substance abuse

Increasing number of ACEs experienced increases impact on all aspects of physical and mental health, behavioral outcomes (e.g., smoking, addiction, alcoholism), and life potential (school and work success).

SAMSA data on ACE outcomes.  The landmark Kaiser study on ACEs.

  Leading Causes of Death in US, 2013 Odds with 4 or more ACEs
1 Heart Disease 2.1
2 Cancer 2.3
3 Chronic Lower Respiratory Diseases 3.0
4 Accidents  
5 Stroke 2.4
6 Alzheimer’s 11.2
7 Diabetes 1.5
8 Influenza and Pneumonia  
9 Kidney Disease  
   10 Suicide 30.1


The biology of adversity:

  • Neurologic:
    • Dysregulation of HPA and SAM Axes
    • Activation of the amygdala
    • Inhibition of the prefrontal cortex
    • Hippocampal neurotoxicity
    • VTA and reward center dysregulation
  • Immunologic:
    • Increased inflammatory mediators and markers of inflammation such as interleukins, TNG alpha, IFN-y
    • Inhibition of anti-inflammatory pathways
    • Impaired cell-mediated acquired immunity
  • Endocine:
    • Long term endocrine changes in ACTH, cortisol, adrenaline and other hormones
    • Inhibition of thyroid function
    • Alterations in Growth Hormone and pubertal hormones
  • Cardiovascular:
    • Increased plasma endothelin 1, total peripheral resistance, DBP and pulse wave velocity
  • Epigenetic:
    • Altered epigenetic regulation leads to differential gene expression
    • Changes in way DNA is read and expressed lead to changes in the way brain and organ systems respond to stress
    • Telomere erosion leads to premature cell death and altered cell replication

What is trauma-informed care in a nutshell?

  • Take the person’s experience into account
  • Don’t ask “What’s wrong with you? Ask, “What happened to you?”
  • Needs to be addressed at clinical and organizational level.

Core principles of trauma-informed care:

  • Empower patients—use their strengths to develop treatment plans
  • Provide options, let patients choose
  • Maximize collaboration—patients, family members, staff
  • Ensure physical and emotional safety
  • Create trust through clear expectations regarding who, what, and how’s of treatment

Tools to screen for ACEs:




ACE score 0-3 without symptoms = Provide Anticipatory guidance

ACE score 1-3 with symptoms or 4 or more ACEs = Counsel and refer

Basics to Institute Trauma-Informed Primary Care:

Foundation: Train ALL staff, use clinic champions, support providers, ongoing evaluation

Screen:  Inquire about current and lifelong abuse, PTSD, depression, substance use

Create Environment:  Calm, safe, empowering for patients AND staff

Respond:  Use onsite and community based programs that promote safety and healing

What can you do tomorrow!

Realize that a lot of who we are and what we do is because of what happened to us.

Embrace trauma-informed values.

Distribute literature about impact of trauma on health

Get training for staff

Assemble a team to support the process

Costs of Drugs for Treatment of Type 2 Diabetes Mellitus

The PHC Blog article on February 6, 2017 gave a very nice overview of the American College of Physicians (ACP) newly released guideline on treatment of Type 2 Diabetes (DM2).  I will quickly summarize: start with metformin, then add another medication as needed based upon side effect profile and patient characteristics.

This guideline is very similar to the ADA guidelines.  I appreciate the ACP attempt to look at side effects of the different classes of DM2 medications and to avoid certain medications in patients with pre-existing medical conditions.  The guideline however doesn’t provide guidance on medication selection based upon cost..  Why does cost effective prescribing matter?  Because for every dollar PHC spends on medications, we have to spend less on other health care or enhanced benefits.  PHC is a non-profit organization with a 4% overhead.  There is not much room for un-necessary spending.

Let’s start first with a simple table of the various choices:

Class Example Action Cost per month
Biguanide Metformin Decrease hepatic glucose, increase insulin sensitivity < $5
Sulfonylurea Glipizide Increases pancreatic insulin secretion < $5
Meglitinide Repaglinide Increases pancreatic insulin secretion $60
Thiazolidinedione Pioglitazone Decrease hepatic glucose, increases insulin sensitivity $10
DPP-4 Alogliptin Increases pancreatic insulin secretion $430
GLP-1 RA Liraglutide Increases pancreatic insulin secretion $550+
SGLT-2 Canagliflozin  ncrease urinary glucose secretion $430


Metformin is the first choice in all guidelines.  Metformin decreases hepatic glucose and increases insulin sensitivity.  Start slow (500 mg with the evening meal) – Start slow with 500 mg once daily with the evening meal and, if tolerated, add a second 500 mg dose with breakfast. The dose can be increased slowly (one tablet every one to two weeks) as necessary (per UTD)..  The longer acting ER formulation has fewer GI side effects and is on the PHC formulary. Metformin is contraindicated for patients with a GFR < 30.  Consider dual therapy at the outset for patients with an A1c > 9% at diagnosis.

Next Steps:

If not at target at 3 months with metformin, diet and exercise, add a sulfonylurea (SU) or basal insulin.  Repaglinide is an option for patient who don’t reach goal with metformin and cannot take a sulfonylurea and who wish to avoid insulin.  It is short acting and may be better for people who skip meals.  Pioglitazone is another choice after metformin and a SU, but it should be avoided in patients with a history of heart failure.  Generally, a third oral agent will not get a patient to goal however if the A1c is over 8% on metformin and a second oral agent.

DPP-4 Inhibitors:

Dipeptidyl-peptidase-4 inhibitor drugs, such as alogliptin, work to increase pancreatic insulin secretion and suppress hepatic glucose production.  They may decrease an A1c by 0.5 to 1%.  A DPP-4 drug may be considered when your patient is close to target, but not yet controlled on metformin and insulin. Alogliptin is a step agent for PHC and is covered if the Rx claims history shows fills for metformin and a second agent (oral or basal insulin).

GLP-1 Receptor Agonists:

Liraglutide is the preferred glucagon-like peptide-1 receptor agonist for PHC. GLP-1 agents increase insulin secretion, suppress hepatic glucose production and slow gastric emptying and thereby increase satiety.  They can decrease an A1c by 1 to 1.5%.  They may be appropriate agents for patients with a BMI > 30 for patients on metformin and a second oral agent or basal insulin.

SGLT-2 Inhibitors:

Canagliflozin and other sodium-glucose cotransporter 2 inhibitors work by lowering the renal threshold for glucose and increase urinary glucose excretion.  The dose has to be adjusted for renal insufficiency. Side effects include UTIs, yeast infections and weight loss.  They may also increase LDL cholesterol.

Ultimately, your patient needs what he or she needs after treatment with diet and exercise.  The medications will cost what they cost, but it is possible to make cost effective choices that get our patients to goal if we choose with care.

James Cotter, MD MPH; Linette Rey, PharmD