Neurodegenerative dementia is common in long-term care (LTC) facilities. It has been estimated that as many as 48% of new admissions to LTC facilities have a diagnosis of dementia (Magaziner et al., 2000). SLPs and other rehabilitation professionals are expected to implement interventions that have positive outcomes for these residents. Such interventions pose special challenges, since clients have a degenerative disease that, by definition, causes an inexorable decline in function over time.
DR was an 85-year-old woman with dementia who had been living at home alone. Her son, who frequently visited, found her on the kitchen floor with a large bruise above her left eye. DR was unable to tell her son what happened. She was admitted to the ER of a local hospital where a hip fracture was discovered. She was subsequently discharged to an LTC facility following surgery. Her admitting diagnoses included hip fracture, dementia and concussion, along with secondary diagnoses of colon cancer, depression, hypertension, and questionable transient ischemic attack.
After one month in the nursing home, her son expressed concern that his mother's "mental state" had deteriorated significantly, particularly related to communication and the ability to "ask for basic things like a washcloth" or "have a short conversation." He also stated that she had no interest in social interaction and was either sitting alone in the hallway or in her room every time he came to visit. The nurses' notes included comments regarding her declining mental status, the son's concerns, and a recommendation to refer to "ST to evaluate patient d/t significant mental status change over last month." This type of confirmatory charting is important to help justify that rehabilitation services are reasonable and necessary" from the perspective of several care professionals.
The Mini-Mental State Examination (MMSE; Folstein, Folstein & McHugh, 1975) was administered to screen cognitive function, the Global Deterioration Scale (GDS; Reisberg, et al., 1982) was used to stage dementia severity, and the Functional Linguistic Communication Inventory (FLCI; Bayles & Tomoeda, 1994) was administered to determine cognitive-communication strengths around which to design a treatment program. In addition to a score of 7/30 on the MMSE, DR's dementia was classified (based on behavioral observation, chart notes and staff interview) as moderately severe (6) on the GDS. Her score on the FLCI (55/82) was also consistent with this level of severity. More importantly, however, she demonstrated several strengths during testing with the FLCI, including the ability to respond to greetings, answer yes/no and two-choice questions, write words to dictation, read single words aloud, reminisce about pictured objects and contribute to a conversation when prompted.
Anecdotally, the clinician noted that DR responded appropriately to short phrases. During the evaluation, the clinician said, "I feel cold today" and hugged her arms to her body. DR reached over and gently rubbed the clinician's arm, indicating that she understood the statement. The results of these formal and informal assessment findings, DR's cooperation during structured tasks, her pleasant demeanor, her family support and reports of her pre-injury cognitive status indicated that she had the potential to benefit from a treatment program designed to capitalize on residual skills and promote social engagement and expression of basic needs.
The following long-term goals were written to be specific, quantifiable, reasonable and necessary: (1) DR will engage in structured conversation and reminiscence activities using a memory book for at least 10 minutes, two times per day with a communication partner; (2) Caregivers will independently use the memory book appropriately during conversation with DR at least twice per day for a minimum of 10 minutes; (3) DR will express her wishes when given a written or verbal choice by caregiver during activities of daily living (ADLs; e.g., dressing, eating) on 80% of opportunities; and, (4) Caregivers will independently use verbal and written cues to provide choices to DR during ADLs. It is important to note that caregiver goals are integral to the sustainability of any intervention program for individuals with dementia and must be included in the plan of care along with resident-focused goals.
The intervention was implemented in several steps, based on a study by Burgio and colleagues (2001) and on one of the original descriptions of memory books provided by Bourgeois in 1990. First, with the help of family members, a list of topics of interest to DR was developed. Pictures also were provided and described using single words or short phrases in large (18 pt) font. Second, staff training was conducted with a focus on effective use of the book and general communication strategies (i.e., short phrases, yes/no and two-choice questions, open-ended questions about feelings or facts in the book). Staff members were trained individually or in small groups, using didactic and active learning (primarily role-play) techniques. Training in providing written and verbal choices also was conducted in the context of ADLs to promote proper use while actually engaged in everyday interaction with DR. Finally, caregiver goals were outlined in the medication log at the nurse's station. Nursing assistants were required to indicate with a check mark if the strategies had been used, in what context they had been used, and the frequency (and duration, in the case of the memory book) of use. A section was also provided for comments. The SLP designed the intervention, trained caregivers and collected data five times per week for one week and three times per week for one week at which time the resident was "discharged from therapy."
Outcomes of the program were positive. Goals 1 and 2: The resident and several staff members engaged in conversation using the memory book for an average of 15 minutes per day. Rather than two, 10-minute conversations per day, the staff used the book for shorter periods of time on a more frequent basis. Nursing assistants demonstrated effective use of the memory book after only 1-3 sessions of training. Goals 3 and 4: DR answered choice and yes/no questions on at least 80% of opportunities provided by the caregiver during ADLs. Spoken verbal cues were used most often and were almost always supplemented with tangible objects (e.g., "Do you want to wear this shirt or this one?" while showing the shirts at the same time; "Do you want milk or juice?" during mealtimes). Written cues were rarely used during ADLs as nursing assistants found them too time-consuming to implement with any regularity. Data were collected through examination of staff notes in the medication log regarding frequency of memory book use and by observing staff during daily activities involving the resident.
The assessment, intervention and outcome evaluation were based on the framework of the International Classification of Functioning, Disability and Health (ICF; WHO, 2001). The ICF is designed to provide a common language and conceptual model of human functioning and disability (WHO, 2001). This framework also "facilitates a holistic view of individuals in their environments, rather than an impairment-only based focus that unfortunately still predominates in many LTC settings. When working with "individuals with dementia, the interventions and outcomes must be shaped by the knowledge that dementia is progressive. Thus, improvement in degree of "impairment" is typically not a reasonable expectation. Rather, gains in the ability to perform functional tasks (e.g., making choices at mealtimes) with caregiver assistance and environmental modifications are more appropriate outcomes to evaluate. Within this model, caregivers are considered part of the LTC resident's immediate personal environment and can have positive (facilitative) or negative (barrier) effects on functioning (Threats, 2002). Their training is integral to success when working with this population.
Many questions regarding effective behavioral treatments for persons with dementia remain unanswered. The statement "More research is needed" does not help clinicians faced with clients who need their help today. Studies do exist that detail specific treatments and their effects on the functioning of individuals with dementia, yet therapists in the field may not have the resources to easily access this literature base, nor the time to integrate findings from different studies on the same topic. Steps have been taken to provide clinicians with a consolidated picture of current research in this area.
In 2001, The Academy of Neurologic Communication Disorders and Sciences (ANCDS), the American Speech-Language-Hearing Association (ASHA), Special Interest Division 2, Neurophysiology and Neurogenic Speech and Language Disorders, and the Veterans Administration collaborated to establish evidence-based practice guidelines for speech-language pathologists who work with individuals with Alzheimer's type dementia. This committee (chaired by Kathryn Bayles, PhD) performed an exhaustive and systematic review of the literature related to assessment and management of individuals with dementia. The literature was evaluated and classified based on a number of criteria (see Frattali et al., 2003 for a detailed discussion of best practice guidelines in speech-language pathology).
Results of the committee's work will be made available to SLPs through publications and presentations in an effort to support evidence-based clinical decision making with this growing population.
Acknowledgements: The Dementia Practice Guidelines Committee consists of the following individuals: Kathryn A. Bayles, PhD, Chair; Esther Kim, MS; Tamiko Azuma, Ph.D.; Sandra Bond-Chapman, PhD; Stuart Cleary, MS; Tammy Hopper, Ph.D.; Nidhi Mahendra, PhD; Patrick McKnight, PhD; Audette Rackley, M.S.; Cheryl Tomoeda, MS; and Jennifer Zeintz, MS.