American Journal of Alzheimer's Disease & Other Dementias®

This study was an attempt to improve the quality of the relationship between dementia caregivers and their loved ones by decreasing the gap between caregivers' expectations and patients' actual functional abilities and by teaching supportive skills. Although a group of 49 caregiver-patient dyads were recruited, the outcome measures of only those dyads (47) that completed the week seven session were used for analysis. Half of the dyads were randomized to an intervention group and the other half to a waiting list. The intervention group (N = 24) completed a four-session caregiver training program in which caregivers first watched investigators administering to their loved ones the Texas Functional Living Scale and later progressed to helping their loved ones by appropriate cueing to perform the tasks involved. Comparisons were made between baseline scores, scores at seven weeks, and scores at the end of 17 weeks on the congruence between caregiver estimates and patients' actual performance on the Independent Living Scale and measures of cognition, function, preillness quality of relationship, caregiver mood, feeling of self-efficacy, and several other measures. We were not able to increase the congruence between caregiver estimates and patients' actual performance and found no change in any other measure. We did find the expected relationship between depression and caregiver sense of self-efficacy.

This article discusses the literature supporting the limited use of tube feeding, antibiotics, and hospital transfers of nursing home residents with end-stage dementia. This article also presents the findings of a study that queried 138 nursing home social service staff members in New York State regarding positions taken by key medical decision makers regarding tube feeding, antibiotic use, and hospitalization of nursing home residents with end-stage dementia. Results are discussed in the context of positions taken by experts in palliative and dementia care. According to social service staff perceptions, the majority of these key decision-makers (e.g., administrators, directors of nursing, and medical directors) take positions inconsistent with palliative care experts. Instead, a majority of them were perceived as more likely to encourage tube feeding, antibiotics, and hospitalization of nursing home residents with end-stage dementia. These findings indicate a strong need for educating administrative staff in state-of-the-art care of residents with end-stage dementia.

This manuscript analyzes the use of the Greater Cincinnati Chapter Well-Being Observation Tool© in observing seven domains of well-being among individuals with dementia. We observed the well-being of 12 individuals while they engaged in Memories in the Making©, an art program for persons in the early and middle stages of the disease that encourages self-expression through the visual arts. This was then compared to the observed well-being in the same individuals during participation in more traditional adult day center activities, such as current events and crafts. Results indicated that the individuals demonstrated significantly more interest, sustained attention, pleasure, self-esteem, and normalcy during participation in Memories in the Making; additionally, there were no differences in negative affect or sadness between the two types of activities. Directions for future research are also discussed.

Most practitioners find disclosing the diagnosis of Alzheimer's disease (AD) to an individual with dementia very difficult. Literature results show a wide variability in attitudes and clinical practice, and diagnosis seems to be more often disclosed to caregivers than to patients. The objective of this study was to examine whether and how diagnosis of AD is disclosed in French general practice and which issues are addressed with the patient.

A questionnaire was sent via mail to 1,629 general practitioners (GPs), 1,105 belonging to the Sentinel's network and 524 specially recruited doctors practicing in the Rhône-Alpes region.

A total of 631 questionnaires were returned (response rate, 39 percent), of which 616 were eligible for analysis. Twenty-eight percent of GPs reported having disclosed the diagnosis to the patient (25 percent mentioned “Alzheimer's disease”), whereas 88 percent considered it their role to announce the diagnosis to the patient. Regarding the type of information provided to the patient, only 25 percent discussed the nature of the illness, 23 percent behavioral problems, and 47 percent depression, mainly for psychological reasons (63 percent). Stress was discussed with 79 percent of the caregivers.

We concluded that GPs do not discuss the consequences of AD and symptoms (e.g., behavioral disorders) with patients, mainly for psychological reasons, whereas they have a less-reluctant attitude toward caregivers. As the GP has the weighty task of providing appropriate community care and psychological support to the patient, it is of utmost importance to reflect on how disclosure of diagnosis can be facilitated.

This work describes the reasons and emotional responses of healthy descendants after counseling for presenilin mutations in early-onset familial Alzheimer's disease (EOFAD), tau mutations in familial frontotemporal dementia (FTD), and prion mutations in fatal familial insomnia (FFI).

A multidisciplinary protocol following Huntington's disease counseling guidelines and a post-test follow-up program were developed to counsel healthy descendants of affected families. The psychological consequences, anxiety levels, and depression status were assessed through validated scales before and after disclosing the information.

Nine people from three different families, one with EOFAD, another with FTD, and the other with FFI came for counseling. Their main reason for testing was to initiate early treatment in the future. Disclosing the information decreased anxiety in two carriers, increased it temporarily in one, and had no effect in another. All noncarriers felt relieved. Overall, after a mean of 30 months of follow-up, no negative psychological reactions were observed. All participants positively valued the program.

Although preliminary, our observations suggest that predictive testing in EOFAD, FTD, and FFI is safe and may be of benefit when performed with a delicate approach under strict pretest counseling protocols and post-test follow-up programs. The emotional reactions were similar, although the diseases, their phenotype, and mutation characteristics were different.

To explore a one-trial 10-item free-recall test as a potential dementia screening tool, we analyzed recall scores and individualized serial position effects in nearelderly (N = 2,336) and elderly (N = 2,371) participants in a population-based survey in Taiwan. Age and sex were significantly associated with recall score [younger > older (p < 0.001); men > women (p < 0.001)]; after controlling for gender and age group, weak association between recall and education was still observed. By contrast, serial position effects (SPEs), defined for each participant and analyzed aggregated over each age group, were not associated with education and tended not to be associated with sex. Primacy effects were observed in 67 to 80 percent, and recency effects were observed in 41 to 54 percent of respondents. Because SPEs were defined for each respondent, we could determine that loss of the primacy effect was associated with significantly larger losses in total recall score in elderly persons who had exhibited both SPEs at the first survey, as compared to those who maintained both SPEs at successive surveys (p < 0.01). Elderly subjects showed slight longitudinal decline in free recall. A one-trial 10-item free-recall test demonstrated age-related cognitive decline in this Taiwanese population survey cohort; SPEs at the individual level may be useful markers for important cognitive change and warrant further study and benchmarking against valid and reliable tests of memory and cognitive decline.

Alzheimer's disease (AD) patients have been reported by caregivers to display “behaviors from past self-identities” (BPSI); however, there is little known about these distinct behaviors. This study, the first to explore BPSI, hypothesized that BPSI were associated with self-memory and cognitive impairments. Its purpose was to determine if AD subjects with and without BPSI differed on measures of autobiographical memory, selective attention, and fluency. The cross-sectional design compared 35 moderatestage AD subjects from an AD research center. Subjects demonstrating BPSI (37 percent) recalled significantly fewer recent autobiographical memories than AD subjects without BPSI. The results establish BPSI as a common behavior among moderate-stage AD patients and suggest that paucity of recent self-memories contributes to BPSI.