Watch Over Me: Therapeutic Conversations in Advanced Dementia
Dementias are clinical syndromes caused by various diseases of the central nervous system and characterized by acquired persistent functional decline and intellectual impairments including, but not limited to, memory, executive function, language, and visual spatial skills. Alzheimer's type dementia is the most common primary form of dementia (Mendez & Cummings, 2003). It is a terminal condition with no treatments currently available to cure or reverse the pathophysiology of the disease. In the United States, an estimated 5 million people have Alzheimer's disease, and this number is predicted to increase to 8 million by 2030. It is the fifth leading cause of death among American adults. Recent data from the Centers for Disease Control and Prevention demonstrate that Alzheimer's disease is the sixth leading cause of death of Americans 18 and older and the fifth leading cause for those aged 65 and older (Xu, Kochanek, Murphy, & Tejada-Vera, 2010). The incidence of dementia of all causes rises by age. Approximately one third of all people over the age of 85 may meet criteria for the diagnosis of dementia, and as many as one half have at least a mild impairment of memory and cognition.
As it is a disease of older adults, people with dementia often have coexisting chronic illnesses of various degrees that affect their digestive tracts, hearts, lungs, kidneys, livers, marrow and blood, spine, hands, feet and joints, eyes, and ears. This results in a significant symptom burden and clinical challenge to effectively assess and treat a person's discomforts and distress. A wise clinician draws on the observations of nurses, other health care professionals, and family caregivers in making assessments. Whenever a patient's distress is severe or prolonged, evaluation and direct examination by a doctor is essential.
Dementias are considered to be terminal conditions. Whether a distinct progressive disease (such as Alzheimer's or Pick's) or in combination with other comorbidities (as in the case of vascular dementia), dementias contribute to shortening affected people's lives. In one Dutch study, only 14% of people with dementia survived to an advancedto late-stage dementia (Koopmans & van Weel, 2003).
The current American health system does not always serve patients with dementia well. A recent study identified that 19% of nursing home decedents with cognitive issues had at least one burdensome transition of care near the end of life (EOL) (Gozalo et al., 2011). Nursing home residents in regions with the highest quintile of burdensome transitions were significantly more likely to have a feeding tube, spend time in an ICU in the last month of life, have a Stage IV decubitus ulcer, or have late enrollment in hospice.
Effectively communicating about advance care planning (ACP) can change and improve care for persons living with dementia. Individuals who engage in ACP are likely to see several specific benefits for themselves and their loved ones. The person with dementia is more likely to have his or her EOL desires known and followed. The person experiences a better quality of life and endures fewer invasive procedures and ICU admissions at the EOL. Families experience less stress and more satisfaction. The costs of care—to families as well as Medicare—are correspondingly less. Advance directives (ADs) have been shown to decrease family conflict and distress, be associated with fewer transfers to hospitals, less death in hospitals and in ICUs, less use of CPR and mechanical ventilation before death, and a higher likelihood that personal EOL wishes will be honored (Caplan, Meller, Squires, Chan, & Willett, 2006).
Whenever possible, ACP should include the completion of formal AD documents. These documents can be emotionally challenging for patients and families to complete, but they can provide family members with clear authority to make decisions for their loved ones and, by clearly conveying the individual's wishes, can alleviate the burden that families may feel in making decisions during future, life-threatening complications of the illness. Care planning that involves patients and their families in collaboration with the patients' physicians and clinical teams is an ongoing process. This chapter outlines a practical approach to communicating with people with dementia and their informal caregiving network of family and friends. It is intended to be practical and applicable in a variety of settings as a guide for professionals of many disciplines. The Watch Over Me©
approach extends to communication with patients and their families in the process of shared decision making, care planning, and anticipatory guidance for life completion and closure.