Characteristics of Young-Onset and Late-Onset Dementia Patients at a Remote Memory Clinic.

BACKGROUND: Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2-8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada. METHODS: A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests. RESULTS: YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver's licence. CONCLUSIONS: Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.

Caring for patients with dementia in the acute care setting.

This article highlights the vulnerability of people with dementia in the acute hospital setting, where they are more likely to experience clinical incidents such as falls, contract infections and be prescribed neuroleptic drugs. This patient group has a significantly longer length of hospital stay and higher mortality rate following discharge compared with those without dementia. As many as one third are discharged to institutionalised care. The article explores the knowledge gap concerning the complexity of caring for a person with dementia and highlights factors that can lead to staff detaching themselves from engaging in meaningful communication with patients. It also discusses the syndrome of 'cascade iatrogenesis' in relation to patients' physical and cognitive decline. More emphasis needs to be placed on addressing these issues to ensure the safety and welfare of people with dementia in hospitals. A case study from the author's clinical practice is used to illustrate the issues.

Home-based caregiver training: Benefits differ by care receivers' dementia diagnosis.

Patients with dementia differ in their behavioral and psychological symptoms according to their diagnosis with Alzheimer's disease (AD) or vascular dementia (VaD), requiring different symptom-management strategies. This study analyzed data from a sub-sample of a randomized clinical trial to determine the effects of a home-based training program on family caregivers of patients with dementia in northern Taiwan. Our sub-sample comprised patient-caregiver dyads (46 VaD and 68 AD patients) followed for 18 months. Caregivers of AD patients in the intervention group had better competence, preparedness, health-related quality of life, and fewer depressive symptoms than those in the control group. Caregivers of VaD patients in the intervention group had better competence and health-related quality of life than those in the control group. The training program benefited family caregivers of AD patients more than caregivers of VaD patients. Specific training programs need to be developed for family caregivers of VaD patients.

Caregiver burden characterization in patients with Alzheimer's disease or vascular dementia.

OBJECTIVE: To characterize the differences of caregiver burden in patients with Alzheimer's disease (AD) and vascular dementia (VaD) in order to improve the care counselling and management plan. METHODS: We included 506 patients consecutively attending the Alzheimer's Evaluation Unit of a Geriatric Unit, evaluated with Mini Mental State Examination (MMSE), Clinical Dementia Rating (CDR), Hamilton Rating Scale for Depression, and Neuropsychiatric Inventory. To all caregivers were administered the Caregiver Burden Inventory (CBI), a 24-item multidimensional questionnaire in which 5 subscales explore 5 dimensions of caregiver burden: (1) CBI-Objective; (2) CBI-Developmental; (3) CBI-Physical; (4) CBI-Social; and (5) CBI-Emotional. RESULTS: The present study included, respectively, 253 AD patients and 253 VaD patients. AD patients at baseline showed a significantly higher instruction level (p < .0001), higher grade of cognitive impairment (MMSE, p < .0001), and increased severity stage of dementia (CDR, p < .0001) than VaD patients. AD caregivers, mainly females (p = 0.010), devoted significantly more length of time care (in months, p = 0.010) and time of daily care (in hours, p = 0.011) and showed a significantly higher burden level in CBI-Objective (p = 0.047), CBI-Physical (p < .0001), CBI-Social (p = 0.003), CBI-Emotional (p < .0001), and CBI-total score (p < .0001), than VaD caregivers. In both caregiver groups, a higher presence of spouses and sons (p < .0001) compared to other relatives was observed. AD caregiver burden showed a significant association with sex of caregivers and length of time care in months. CONCLUSIONS: AD caregivers showed a higher burden level than VaD caregivers, and this appeared to be associated with sex and length of time care.

Cohort profile: the Health and Memory Study (HMS): a dementia cohort linked to the HUNT study in Norway.

The aim of the Health and Memory Study (HMS) of Nord-Trøndelag, Norway, was primarily to establish a database suitable as basis for a large number of studies on dementia. Data from the HMS study were collected via questionnaires and examinations during the period from 1995 to 2011. The dementia panel consists of 620 participants residing in nursing homes and 920 participants referred to memory clinics of Nord-Trøndelag. Data from this dementia panel may be linked to the Nord-Trøndelag Health Study (the HUNT study), three large population based health surveys that took place in 1984-86 (HUNT1), 1995-97 (HUNT2) and 2006-08 (HUNT3). Data collection is complete and the participation rate in the HUNT1 for patients diagnosed with dementia was 86%. The sub-studies in the HMS are focused on examining risk factors, caregiver burden, healthcare consumption and economic consequences of treating and having dementia. Researchers interested in the HMS study are invited to contact HUNT at hunt@medisin.ntnu.no.

The Bedford Alzheimer nursing-severity scale to assess dementia severity in advanced dementia: a nonparametric item response analysis and a study of its psychometric characteristics.

The Bedford Alzheimer Nursing-Severity Scale (BANS-S) assesses disease severity in patients with advanced Alzheimer's disease. Since Alzheimer is a progressive disease, studying the hierarchy of the items in the scale can be useful to evaluate the progression of the disease. Data from 164 Alzheimer's patients and 186 patients with other dementia were analyzed using the Mokken Scaling Methodology to determine whether respondents can be ordered in the trait dementia severity, and to study whether an ordering between the items exist. The scalability of the scale was evaluated by the H coefficient. Results showed that the BANS-S is a reliable and medium scale (0.4≤H<0.5) for the Alzheimer group. All items with the exception of the item about mobility could be ordered. When later item was eliminated from the scale, the H coefficient decreased indicating that the scalability of the scale in the original form is more accurate than in the shorter version. For the other dementia group, the BANS-S did not fit any of the Mokken Scaling models because the scale was not unidimensional. In this group, a shorter version of the scale without the sleeping cycle item and the mobility item has better reliability and scalability properties than the original scale.

AwareCare: development and validation of an observational measure of awareness in people with severe dementia.

Signs of sensory and perceptual awareness can be observed in people with very severe dementia, and may be influenced by the extent to which the environment offers appropriate stimulation. We developed an observational tool, AwareCare, which care staff can use to identify signs of awareness in residents with very severe dementia, based on the concept of the Wessex Head Injury Matrix (WHIM). Using WHIM items as a guide, and following focus groups with care staff and family members, an expert panel identified 28 environmental stimuli and 35 response categories for the initial version of AwareCare. After baseline assessments of cognition, well-being and quality of life were taken, 40 residents were observed individually for 30 minutes on 5 occasions. Based on the observational data, 10 stimulus categories and 14 response categories were identified for further analysis and formed the final version of AwareCare. All participants showed awareness to varying degrees. Social stimuli elicited the most responses. Greater awareness was associated with better cognitive function, self-care, mobility, and responsiveness, but not with proxy-rated quality of life. Understanding the nature of awareness in this group is an important element in ensuring appropriate levels of interaction and stimulation, and hence enhancing quality of care.

Does theatre improve the quality of life of people with dementia?

BACKGROUND: A new communication method, the "Veder method", has recently been developed. Caregivers are trained to apply this method in a group activity ("living-room theatre activity") for people with dementia in which theatrical stimuli are used in combination with proven emotion-oriented care methods. The aim of this exploratory study was to evaluate the added value of the Veder method group activity compared to a regular reminiscence group activity and to investigate whether professional carers can achieve the same effects with the Veder method as professional actors. METHODS: A quasi-experimental three-group design was used. Experimental group 1 (E1; n = 65) joined a living-room theatre activity offered by trained professional caregivers. Experimental group 2 (E2; n = 31) joined a living-room theatre activity offered by professional actors. The control group (n = 55) received a usual reminiscence group activity. Behavior, mood and aspects of quality of life were measured using standardized observation scales at three points in time: (T1) pretest; (T2) during the intervention and; (T3) post-test, two hours after the intervention. RESULTS: During the intervention, significant differences were found in favor of the group that was offered a living-room theatre activity by actors (E2) on different aspects of behavior, mood and quality of life. At post-test, people in E2 were more alert compared to the control group. Moreover, they recalled more memories and showed less socially isolated behavior compared to the control group. CONCLUSION: This exploratory study shows that the Veder method has some clear positive effects on behavior and mood of people with dementia when applied by professional actors.

Type 2 diabetes and vascular dementia: assessment and clinical strategies of care.

Type 2 diabetes has been associated with an increased risk of dementia compared to non-diabetes. Vascular dementia is increased two-to-three fold in persons with type 2 diabetes. Proper management of risk factors can reduce the risk of developing cognitive impairment for persons with diabetes.

Using video simulated presence to reduce resistance to care and increase participation of adults with dementia.

BACKGROUND: Cognitive and functional decline in dementia generally impairs performance of basic care activities. Staff assistance during these activities frequently results in confusion, anxiety, and distress, expressed through resistance to care (RTC). METHODS: A single-system ABA withdrawal design (n = 1) evaluated the effect of video-simulated presence (VSP) for decreasing RTC and increasing participation. A family member pre-recorded videos for use during episodes of RTC, in which the family member spoke directly to the participant to encourage participation. RESULTS: Introduction of the VSP significantly reduced RTC during the basic care tasks of feeding and talking medication. This effect was reversed when the intervention was withdrawn. Participation increased following VSP, demonstrating clear trends toward clinical significance. CONCLUSIONS: This person-centered intervention, based on VSP of a family member, provides encouraging results for reducing RTC and increasing participation of adults with dementia in basic care tasks.

Young-onset dementia: a review of the literature and what it means for clinicians.

It is estimated that more than a half million people in the United States are living with young-onset dementia and another half million with mild cognitive impairment, a precursor of dementia. Relatively little has been written about the psychosocial needs of these people, but information can be extrapolated from the literature on dementia in older adults and the developmental tasks and roles of middle age. This article synthesizes this literature and provides information to help psychiatric nurses and other health care professionals better understand individuals living with young-onset dementia.

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community.

BACKGROUND: Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. OBJECTIVE: To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. METHODS: The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. RESULTS: In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. CONCLUSION: The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low.

Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model.

In this study we assessed the new transactional stress and social support model, postulating the role of neuroticism, ethnicity, familism, and social support in perceived burden in dementia caregivers. We used a convenience sample (N=77) of African American and White dementia caregivers. Results substantiated interrelationships among social support variables, and the influence of perceived positive social support on burden. Neuroticism was related to the perception of positive social support and burden. Results corroborated the model, focusing on neuroticism and quality of social support in modeling perceived burden in family caregivers. Findings call attention to the role of presumably long-standing individual differences in neuroticism that influence caregiver appraisals of stress and social support.

Psychometric performance of an assessment scale for strain in nursing care: the M-NCAS.

BACKGROUND: Multiple instruments exist to measure dementia behaviors, but the nursing staff perspective on those behaviors and their level of burden has not been well measured. The goal of this study was to examine the psychometric performance of the Modified Nursing Care Assessment Scale (M-NCAS), a 28-item nurse rating of burden associated with care for institutionalized individuals with dementia. Nurses rate items in terms of extent to which the behavior or characteristic is present ("attitude" domain), and extent to which it is a burden ("strain" domain). METHODS: Data from 282 patients enrolled in a 12-week, double-blind, randomized clinical trial comparing risperidone treatment to placebo was used to evaluate M-NCAS item performance, internal consistency reliability, and construct validity. Empirical subscales were identified via exploratory factor analysis (EFA). RESULTS: Four poorly-performing items were deleted from further analyses. EFA identified 3 "attitude" subscales and 5 "strain" subscales. Cronbach's alphas were 0.65 and above. Correlation with the Cohen-Mansfield Agitation Inventory and the BEHAVE-AD, clinical ratings of dementia behaviors, were low to moderate. CONCLUSION: The M-NCAS provides a valid and reliable means of obtaining care burden ratings from formal caregivers in long-term care, and provides a method for evaluating dementia interventions from the perspective of nursing staff.

[Family caregivers of patients with dementia: impact of factors of burden]. / Pflegende Angehörige von Demenzerkrankten: Belastungsfaktoren und deren Auswirkung.

OBJECTIVES: The enclosed paper tries to encompass the relatives of patients of three different geriatric groups diagnosed. It tries to establish the difference in care and which special factor influences each group concerning the burden of care. PATIENTS: Comparison of three groups: 1. Alzheimer-dementia, 2. vascular-dementia, 3. nondemented patients. RESULTS: It was found that it is mostly partners and children who are the carers in all three groups diagnosed. The social behaviour of the Alzheimer patient is the most stressful part of caring. The relatives of patients with vascular dementia are most stressed by disturbing behaviour and memory impairment and the relatives of the non dementia group by impaired mood and inadequate behaviour. CONCLUSIONS: The burden of care is the hardest for the relatives of the Alzheimer patients. For all three groups diagnosed the non cognitive symptoms are the main factor of the carers burden.

Family caregiving in dementia--an analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate.

The burden of caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver burden has probably reached its upper limit. Primary family caregivers of 39 DAT and 40 VD patients who were being considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden: general strain, isolation, disappointment, and emotional involvement, were correlated with the patients' diagnoses, abilities, and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver's gender, social class, and previous institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the patients' ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers. Different symptomatology in patients of the two diagnostic groups was related to special aspects of the burden. Multiple regression analysis showed that the amount of caregiving time each week and impaired sense of own identity, misidentifications, clinical fluctuations, and nocturnal deterioration in the patients predicted the breaking-point.