Winter 2008

A Family Affair
By James Siberski, MS
Aging Well
Vol. 1 No. 1

A client with dementia is a challenge for a geriatric care manager (GCM), yet gives a GCM the opportunity to impact an individual’s quality of life. However, the diagnosis can be a crisis for the spouse, children, siblings, friends, and others, not just for an individual caregiver.

One difficult case involved a female math teacher with early-midstage dementia. She refused to stop driving, drank to excess, had poor short-term memory, and acted aggressively toward her husband, the primary caregiver. Her husband was depressed, and, frustrated by the family’s lack of involvement, wanted the GCM to tell them the unvarnished truth. The client’s son and daughter, being in denial, believed there was little wrong with their mother and had hired the GCM to “fix” everything.

The husband, who was always at odds with the children, demanded the GCM exclude them when creating a care plan. He even fired the GCM (fortunately, for less than one day) for talking to them. The children, on the other hand, would call the GCM for information about their mother. When the news wasn’t good, they became irritated and upset with their father for “exaggerating” their mother’s condition. The GCM’s assessment: The mother was in denial. The husband, who shifted from anger to depression, was accepting of the dementia diagnosis. And the children were both in denial and angry, attempting to find a way out for themselves and their mother. Further, their states weren’t static but ever changing, depending on the situation.

Grasping the Reality
Realistically, a dementia diagnosis is terminal. It’s presently an incurable, chronic, progressive condition. When clients and their social units are given the news, they ultimately must cope with a difficult and often lengthy experience. Applying Elisabeth Kübler-Ross’ stages of dying—denial, anger, bargaining, depression, and acceptance—can be helpful. They’re not sequential and can apply to both the client and his or her social unit, who are frequently in different stages. This permits the GCM to assess how each individual is coping and tailor communication and interventions that can minimize conflict and negative reactions.

Understanding that these coping methods can be adaptive or maladaptive can inform the GCM about how to proceed. When the denial is adaptive, allowing the client or the member of the social unit the time to adjust, no action is necessary. Some clients, such as the teacher discussed above, mistakenly claim that all older people forget and misplace things. But if the client continues to follow the treatment plan, doesn’t engage in negative behavior (arguing, abusing alcohol, driving), and continues to do the things he or she is able, there’s no benefit to breaking through that denial.

If, however, the family is in denial, demanding that the client participate in family activities he or she cannot tolerate due to dementia and the inability to manage the stress associated with them, action is certainly indicated and is typically determined on a case-by-case basis. If clients are continually faced with stress that they cannot manage, the likelihood of dysfunctional behavior is significant. And stress-management ability progressively decreases in dementia (Richards & Beck, 2004).

Step by Step
Each stage requires a different approach. The generalities of aging are best discussed in the denial stage. I refrain from referring to the actual diagnosis or talking about Alzheimer’s as the cause of the situation. One approach is “if/then, what?”—”If this happens, what can be done?” It’s good for minor issues.

The anger stage is difficult. If a GCM is fired, he or she should offer to find a replacement so continuity of care can be maintained. Since anger can often be short-lived, tolerance is an option. When verbal anger has the potential to become physical, limits must be set. If the client’s anger is extreme, a psychiatric consultation is appropriate. Validating the person’s feelings and emotions works as well.
If depression is an issue, evaluate the need for treatment and referral. The GCM’s empathic ability to listen will be beneficial.

In the bargaining stage, encourage the client or social unit to follow the treatment plan and establish a pattern of compliance. Keep expectations reasonable, provide as much education as possible, and pay close attention to medical issues.

Acceptance is a planning stage. The curative approach taken in the illness’ early stages will eventually be replaced by palliative care. The GCM should discuss placement, tube feeding, hydration, antibiotics, and other possible invasive procedures before they become issues. The client, social unit, and medical team should all be involved.

Results
In the case of the math teacher, the GCM provided education, minimal counseling, and frequent updates to limit surprises. The teacher’s husband was referred to a psychologist for depression but was also angry with the GCM for sharing what he considered too much information with the children. On a weekly basis, the GCM explained the necessity of this and advised him of every communication in advance. With his help, the GCM solved the client’s behavioral challenges. The weekly attention minimized conflict between the GCM and the husband. The client had a psychiatric consultation, and her aggression responded well to medication. Driving became a nonissue thanks to the car being “disabled” due to a “missing part” that was supposedly ordered but mysteriously never seemed to arrive.

As the disease progressed, a part-time caregiver was hired to provide meaningful activities for the client and respite for the spouse. The children, who received appropriate educational materials, generally remained in denial. Whenever they had a quality visit with their mother, they believed their perceived bargain with the GCM to make everything better was successful. However, when the following week’s inevitable report from the GCM noted bad behavior, the bargaining stage was replaced by denial.

The GCM’s ability to assess everyone kept conflict to a manageable level and generally maintained family harmony. It clearly requires significant effort to prevent the hostility, shouting, finger-pointing, and hurt feelings that so often occur with progressive dementia.

— James Siberski, MS, is coordinator of the Gerontology Education Center for Professional Development and assistant professor of gerontology at Misericordia University in Dallas, Pa., and an adjunct professor of psychiatry at Penn State University.

Reference
Richards, K.C. & Beck, C.K. (2004) Progressively lowered stress threshold model: Understanding behavioral symptoms of dementia. Journal of the American Geriatrics Society, 52(10), 1774-1775.