Abstract
Clinicians, caregivers, and the people with Alzheimer's themselves all experience the impact of communication breakdown caused by the progression of this disease in its middle to later stages. Several of the communicative changes that may occur in this transition period are discussed and strategies for maintaining avenues of positive communicative interaction are presented.
The ability to successfully communicate puts us in the driver's seat of life. Communication abilities are integral to our humanity. 1,2 Our communicative style and strategy, like our driving, is as varied and unique as our personality, history, experience, network of relationships, general health, 1 and coping style. 3 Further, the success of our communicative attempts (both verbal and nonverbal) is dependent upon the intricate and elegant interconnections of our higher cortical functions. 2 When the road of life throws us a major curve, such as the diagnosis of Alzheimer's disease, we are, to date, inevitably faced with the eventual loss of our ability "to interpret and interact with others and with the environment." 2(p161) Chances are we will be ousted from the driver's seat and relegated to the backseat.
Such risks to our quality of care 1,4 and to our quality of life 5,6 have been linked to the progressive deterioration of our communicative ability. Those who elect to help us by doing the driving, our caregivers, are at risk of experiencing changes in their quality of life as well. 7-12 Since the most reliable index of quality of life is that person's own assessment, 13 we would hope that our caregivers take the time and have the initiative to ascertain our views. In the presence of communication breakdown and in the absence of an advanced directive, this will be challenging. Most of us would hope to remain the navigator of our destination. We would view our backseat as being in a chauffeured limousine, a taxi, or a bus with a route of our choosing. We would want to maintain our individuality; our uniqueness does not change with the development of dementia. 4 Those who do the caregiving would also benefit from improved communication between driver and navigator. The ride is often more pleasant for both when there is a clearer sense of the right direction.
In the mid-to-late stages of Alzheimer's (defined in this report as stages 6 and 7 respectively in the Global Deterioration Scale [GDS]) 14 communication abilities are viewed as seriously impaired. Traditionally communication in stage 6 has been characterized as fragmented messages with only parts of words spoken and other words merely implied. Other messages appear to be meaningless strings of nonwords sprinkled with the occasional real word. True conversations are rare. In general, comprehension of written and spoken forms of language is failing. 15
By stage 7, communication has been traditionally characterized by a limited vocabulary of only a few intelligible words. Expressive attempts may echo the sender's message or may only seem to resemble words. Eventually, vocabulary may ultimately be lost altogether in muteness. 15
However, the recent findings of Bayles et al 16 suggest that many people with late stage dementia retain more language than has been indicated by these scales. The analysis of their participant's performance indicated that "language abilities and verbal output vary markedly in patients with late-stage AD [horizontal ellipsis] the presence of language in the three bedridden individuals in the longitudinal study suggests caution in assuming that no language is possible in individuals who are bedridden." 16(p180)
What can be done to facilitate communication in mid-to-late stage Alzheimer's and how can quality of care and quality of life be maintained?
One approach would be to focus intervention efforts directly on the behavior of the people with Alzheimer's disease. "The older view was that there can only be a one-way journey, from left to right. Now, however, as a richer body of evidence becomes available, that view is no longer tenable. Some people undergo a degree of rementing, and reacquire capacities for meaning-giving that had, apparently, been lost." 3(p80)
Recent reviews of direct communicative intervention studies 2,6 have considered a wide range of techniques currently available for dementia care (eg, aromatherapy, attention focusing, bright light therapy, cognitive stimulation programs, communication adaptive learning, massage, memory retraining, multiple therapies, multisensory environment, music, pet therapy, reality orientation, reminiscence, simulated presence therapy, spaced retrieval, toys, validation, and walking). The majority of participants in the studies to date have been in the mild to moderate stages of dementia and more research is needed to examine the effectiveness of treatment techniques with moderate and moderately severe dementia. 6 "Overall the evidence broadly emerging would support the efficacy of at least some communication interventions in dementia." 2(p186) "It is likely that any one or a number of approaches may be appropriate for a given individual and the relevant approaches will change as the disease progresses." 2(p186)
With regard to people with severe dementia, a recent study suggests the possibility that small increases in basic verbal behaviors are possible when behavior modification techniques such as contingent reinforcement and contingent reinforcement with modeling of correct responding are used. 17 The subject population in this investigation was limited to 5 people with severe dementia; however, in light of their weak baseline performances, the authors believe that "even the small increases in verbal behaviors found here are important." 17(p631)
A second approach would be an indirect intervention that would focus on the behavior of the caregivers and ways in which to modify their interaction strategies with the persons in their care. Providing intervention directed toward the caregivers rather than toward the people with dementia has been reported to be a novel approach to service delivery. 18 Until recently, research in this area has been minimal 9; it is believed that communication can be maintained for a longer period of time by educating frontline caregivers about the language and communication changes that occur over time in people with Alzheimer's. 20 Further, improving and maintaining effective communication has been shown to benefit not only the people with Alzheimer's but also the caregivers. 21
Orange et al 22(p136) write,
Caregivers need to be made aware of the likelihood that over the course of DAT [dementia of the Alzheimer type], communication problems and their resolution will vary considerably, and that they will most likely increase in frequency. Caregivers will also need to know that the rate of successfully overcoming communication problems may decline over the course of DAT. However, caregivers will need to learn that they may be able to overcome these progressive declines in communicative performance if they adjust their language, speech and nonverbal components of their communication, the environments in which communication takes place, and their attitudes, perceptions, and expectations of performance.
Caregivers can be divided into 2 groups: frontline care providers and other healthcare professionals. The frontline care providers are often further subdivided into family members (informal caregivers) and nursing assistants (formal caregivers).