NATURAL PROGRESSION OF DEMENTIA
The tasks of navigating our days and world have been aptly divided into Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (iADL). A checklist or inventory of ADLs and iADLs is essential when staging dementia. A simple approach to remembering the difference is to think of ADLs as everything you do in the morning to prepare yourself for the day, such as: bathing, dressing, transferring, toileting, grooming, and feeding oneself. Everything you do to navigate the world after you are ready for the day are identified as iADLs, such as: managing finances, transportation, medication, communications, laundry, housework, shopping, and cooking.
As with the inventory of ADLs and iADLs, the simplification of a range of conditions into stages can be useful in understanding patients' experiences in, anticipating and preparing for pertinent issues and problems. Reisberg et al. (1989) defined seven stages of dementia.
In Stage I, there are no clinical symptoms. Stage II is characterized by a person complaining about forgetfulness. In Stage III, other people typically begin to notice a person's functional deficits. A hallmark of Stage IV is
the impairment of one or several iADLs with preservation of ADLs. Due to disorientation and progressive loss of iADLs, people in Stage V appear well dressed and ready for the day. However, they are disoriented and unable to perform most iADLs; hence, Stage V is often described by the saying “All dressed up and nowhere to go.” Stage VI is marked by incontinence, an inability to recognize loved ones, and wandering. It can be thought of as the “Velcro” stage in which people tend to cling to others, particularly in dementia facilities or nursing homes. In Stage VII a person is dependent in ADLs and can only speak a few words. The patient is dependent on others for mobility such as rotation in bed and transfer for toileting and wheelchair. Most time is spent in bed, unable to effectively communicate with others.
EOL care in dementia can be thought of as spanning Stages V, VI, and VII and may take place over many months or several years. However, Stage VII is when the patient is dependent in ADLs and clearly approaching the EOL predominantly from dementia. Unfortunately, at present it is only in the later substages of Stage VII, when the affected person is unable to ambulate or speak more than six words in a day, that an individual with dementia meets Medicare eligibility criteria to receive hospice care.
THE FAMILY JOURNEY
Whenever one person receives a serious diagnosis, a family experiences the subsequent illness. Virtually every patient with advanced dementia has a family, whether it is a family by blood relations, marriage, or friendship. For an elderly person with advanced dementia, family can be thought of by the phrase “for whom the person matters.” Operationally, family are the people who visit, call, and physically care for the patient, which often includes their long-time nurses, aides, and housekeepers.
Physicians and clinical teams can support each family member and guide a cohesive process of making decisions and providing care. Family members who are children, parents, or siblings of the person with dementia can be expected to have discernible styles of relating to one another— and making decisions—that have been formed by history and culture. An understanding of the family system can help in counseling patients and family members in coping and on the caregiving system throughout the illness. The dominant personalities and decisional style of a family often become apparent over time. There may be insiders and outsiders in a family's patterns of conversing, making decisions, or providing care. Distance, time, and financial resources may all contribute, but a family's history and its members' personalities also contribute to the ways people approach these difficult situations. Clinicians can astutely take note of these family characteristics, without judging which members of a divided family
are right or wrong. Observations of a family's style, which may vary by culture, are valuable in counseling people who are struggling not only with treatment decisions, but also with the physical, emotional, and social strains of dementia. Skillful counseling can identify sources of strength within families and guide family members in coming to agreement and, correspondingly, avoid conflict.
Having someone they love become seriously ill naturally makes people feel emotionally vulnerable; it evokes worry, anxiety, and fears. Supportive counseling for a family member of a patient with advanced dementia can start by “stating the obvious”: We have found that it puts family members (including a patient's close friends) at ease and builds a therapeutic alliance to say aloud that it is apparent how much they love and are worried about the person who is our patient.
Similarly, during family meetings for the sake of making decisions, when differences of opinion are voiced—or tempers flare—between family members, it is often helpful to explicitly acknowledge that despite disagreements, everyone present loves the person who is ill, and therefore, everyone present is hurting. Clinicians can add that people come to these decisions differently—and we may or may not be able to come to an agreement about whether and for how long to use specific treatments—but each one is trying to do what they consider right and best for the person.
A family's journey from pre-diagnosis through the diagnosis, changes in plans and shifts in roles through chronic care, shared care, institutionalized care, and ultimately through the EOL care and into grief will be as unique as a fingerprint. Yet within the unique, personal experiences of every patient and family there are predictable challenges, decisions, and dynamics that every family is likely to encounter (Caron, Pattee, & Otteson, 2001).
When an elderly mother or father becomes affected with dementia, adult children commonly feel conflicted about making decisions, sometimes against the parent's wishes. It may be a decision to no longer allow the person to drive or use the stove.
I have found it helpful to present these challenges as developmental stages within the lifecycle of a family. During adolescence, parents often need to enforce limits for the safety and well-being of the teenager, even when it makes the young person angry and causes a scene. To do otherwise would be irresponsible. When dementia robs a parent of the ability to safely drive or use a stove top, it is only responsible for the children who were once those teenagers to set limits, even if doing so makes one's mother or father angry—and causes a scene. Most families eventually come to realize this on their own, but anticipatory guidance by a clinician can facilitate the process, avoiding a lot of confusion and guilt feelings along the way.