The situation of caregiver counselling in patients with frontotemporal lobar dementia in old psychiatry

Caregiver counselling is an indispensable feature of current concepts for dementia treatment. Self-support groups and psychoeducative programms for caregivers of patients with Alzheimer's disease may reduce the burden of nursing and psychological strain. Specific caregiver needs from patients with frontotemporal lobar dementia (FTLD [frontotemporal dementia, semantic dementia, progressive aphasia, corticobasal degeneration]) are only partially taken into account. We conducted a German wide epidemiologic study which revealed that specific counselling for supporting relatives and caregivers of patients with FTLD is only fragmentary in hospital services for old age psychiatry. In most cases, they are referred to the local Alzheimer's disease Associations (89 %). Besides that, the existence of large hospital care units has significant negative repercussions on psychosocial supply for caregivers of patients with FTLD. To establish decentralized support units by these hospitals would lead to a significant improvement of medical and social care in this field.     

Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 Dementia Research Network

BACKGROUND: Dementia is a rapidly growing problem in all parts of the developing world. Such societies are characterised by low levels of awareness regarding dementia as a chronic degenerative brain syndrome, and by an absence of supportive health and welfare services. There is reliance upon families as the cornerstone of support and care. However, surprisingly little is known of the care arrangements for people with dementia and the strain experienced by their family caregivers. METHOD: In a qualitative study of 17 caregivers of people with Alzheimer's disease identified through an innovative case-finding program in Thrissur, South India, we obtained information on the range of care arrangements, attitudes towards care giving roles and sources of strain. RESULTS: The majority of caregivers were young women, often daughters-in-law of women with dementia. The principal sources of caregiver strain were behavioural problems associated with the dementia syndrome, and incontinence. Strain was exacerbated by the lack of supportive response by local health services, and by lack of support and, sometimes, criticism from other family members. Family conflict was commonly encountered. The majority of caregivers experienced significant deterioration in their mental health. One caregiver unfortunately committed suicide after the death of her husband. CONCLUSIONS: There is a clear need for more education, advice and support for families affected by dementia. Community services in developing countries should consider training existing domiciliary outreach services, the community-based multi-purpose health workers, to identify and support family caregivers.     

Demographic and contextual factors related to knowledge about Alzheimer's disease

Accurate knowledge about Alzheimer's disease (AD) is essential to address the public health impact of dementia. This study examined AD knowledge in 794 people who completed the Alzheimer's Disease Knowledge Scale and questions about their background and experience with AD. Whereas overall knowledge was fair, there was significant variability across groups. Knowledge was highest among professionals working in the dementia field, lower for dementia caregivers and older adults, and lowest for senior center staff and undergraduate students. Across groups, respondents knew the most about assessment, treatment, and management of AD and knew the least about risk factors and prevention. Greater knowledge was associated with working in the dementia field, having family members with AD, attending a related class or support group, and exposure to dementia-related information from multiple sources. Understanding where gaps in dementia knowledge exist can guide education initiatives to increase disease awareness and improve supportive services.     

An educational intervention to support caregivers of elders with dementia

The majority of home-dwelling elders with dementia are cared for by family members or friends. Interventions to support community-based caregivers are needed. A community-based seminar series was provided to 300 self-referred family caregivers with dementia. Participants were surveyed for caregiver burden and overload and perceived competence before and 6 months after the seminars. In all, 88 (29%) of participants completed a 6-month survey. Self-perceived caregiver competence improved (3.9 +/- 1.6 to 5.0 +/- 0.32, P < .006); a trend toward improvement in caregiver overload, and there was no change in caregiver burden. Caregivers with baseline parameters indicative of higher burden, overload, or lower competence showed improved scores at 6 months. The educational program was effective in improving competence and may have slowed the expected increase in burden associated with caring for those with a progressive dementia. Caregivers with higher burden may be targeted for this type of intervention, as they seemed to benefit the most.     

How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer's disease?

The caregiving situation among caregivers and their spouses with Alzheimer's disease, the support and services received, the unmet needs, and the caregivers' satisfaction with the services are examined. The study included a survey of a random sample of 1943 caregivers of persons with Alzheimer's disease in Finland. Mean age of the caregivers was 78.2 years, and 35% had poor subjective health. Disabilities and behavioral symptoms were common among the spouses with Alzheimer's disease. The services most often offered were financial support (36%), technical devices (33%), physiotherapy (32%), and respite care in nursing homes (31%). Most often needed services were physiotherapy for the spouse with dementia (56%), financial support (50%), house-cleaning (41%), and home respite (40%). Only 39% of the caregivers were satisfied with the services, and 69% felt they did not have any influence on what services were offered. It was concluded that official services poorly meet the needs of these caregivers.     

A disease management program for families of persons in Hong Kong with dementia

OBJECTIVES: This study tested the effectiveness of a dementia care management program for Chinese families of relatives with dementia on caregivers' and patients' health outcomes over a 12-month follow-up period. METHODS: The dementia care management program is an educational and supportive group for caregivers that lasts six months. A controlled trial was conducted with 88 primary caregivers of persons with dementia in two dementia care centers in Hong Kong. Family members were assigned randomly to either the dementia care program or standard care. The two groups were compared for patients' symptoms and institutionalization rates and caregivers' quality of life, burden, and social support upon recruitment and six and 12 months after group assignment. RESULTS: Over the 12-month follow-up period, patients with family members in the dementia care program showed significantly greater improvements in symptoms and institutionalization rates and their caregivers reported significantly greater improvements in quality of life and burden compared with the control group. CONCLUSIONS: The findings provide evidence that the dementia care management program can improve the psychosocial functioning of Chinese persons with dementia and their caregivers.     

Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease

Frontotemporal dementia (FTD) is the second most prevalent dementia after Alzheimer's disease (AD). We compared 29 FTD and 90 AD caregivers with respect to burden, health-related quality of life (HQoL) and coping. FTD caregivers were more burdened than AD caregivers, and caregivers of patients who were demented for shorter duration had lower HQoL. We furthermore compared the 29 FTD caregivers with 34 caregivers of institutionalized FTD patients to understand their specific caregiver issues. Caregivers of FTD patients institutionalized after shorter dementia duration were most burdened and affected in their HQoL. Overall, passive coping strategies were associated with increased burden and decreased HQoL. We recommend that FTD caregivers be offered more support than AD caregivers. Furthermore, we suggest that interventions target passive coping strategies.     

What causes problems in Alzheimer's disease: attributions by caregivers. A qualitative study

OBJECTIVE: To gain insight into caregivers' understanding of the causes of behaviours they find problematic in people with Alzheimer's disease in order to inform the development of educational strategies. METHODS: A qualitative, semi-structured interview was used. Participants were 205 caregivers for a person with Alzheimer's disease, all of whom were aware of the diagnosis and who had been recruited as part of a larger longitudinal study. Participants were from inner-city and suburban London/semi-rural Essex. The main outcome measures were caregivers' understanding of: the cause of problematic behaviour; the ability of the person with dementia to control this behaviour; the prognosis of the illness. RESULTS: Most carers attribute the cognitive, behavioural and psychological symptoms of dementia to causes other than dementia; many believe that the person with dementia has control over their behaviour and substantial numbers believe the person with dementia will return to normal. CONCLUSIONS: This study suggests that providing facts about the illness to caregivers is not enough, as caregivers may not understand that the symptoms they observe are related to the diagnosis. Education by clinicians should focus on the understanding of caregivers and in particular explore the caregivers' attributions of the symptoms which are present in the person for whom they care.     

Normal aging and dementia disorders--coping and crisis in the family

At present we have limited possibilities to treat dementia disorders. One way to intervene in the progress is to support the family. In this investigation the situation of the family and the primary caregivers to patients with dementia disorders are studied. One group consists of 171 patients admitted to a geropsychiatric unit. Relatives to these patients were interviewed. A subgroup of these patients were formed consisting of 28 patients with Alzheimer's disease and senile dementia of Alzheimer type. The patients in this group were rated with a geriatric scale for measuring dementia. In another group of 28 long-stay patients on a geriatric ward the level of dementia and the family situation was studied. As a control group 26 individuals from a county in Sweden was chosen, all of them 85 years of age or older. They were considered the most healthy individuals in the area in this age group. The need of support for these individuals was studied. The results indicate that individuals in high age, although considered healthy, need much support. All the families to patients with dementia disorders need support more or less. Either group therapy or individual psychotherapy can be given. Adequate formal help from the society and psychological support to the primary caregivers probably delay institutionalization.     

Early stage dementia group: an innovative model of support for individuals in the early stages of dementia

Traditionally, supports and services for people diagnosed with Alzheimer's disease have focused on the caregivers. The increase in early diagnosis of Alzheimer's disease has resulted in greater numbers of older adults that have some insight and awareness of their deficits and are capable of dealing with the ramifications of their illness. Yet there are few places to turn for support and education. Circle of Care, a community-based home support agency in Toronto, has developed a support group for individuals with early stage dementia. Comprehensive Rehabilitation and Mental Health Services (COTA), a community-based rehabilitation agency, was invited to provide a co-facilitator for this group. To date, three groups have been held, each one having a fixed membership and meeting for eight sessions of one and a quarter hours. Topics focused on causation, coping with memory problems, loss, grief, and daily living skills. Positive themes emerged to reveal feelings of affirmation, camaraderie, and improved confidence, while feelings of helplessness and frustration were also raised. Implications for future planning and interventions also will be discussed in this paper.     

Impact of a multimodal rehabilitative intervention on demented patients and their caregivers

Alzheimer's disease is becoming a social, political, and economic issue as a result of both the growing number of people affected and the enormous economic, social, and emotional costs involved in caring for Alzheimer's patients. The aim of this study is to evaluate the effects of a multimodal intervention program for patients with Alzheimer's disease and their caregivers. The study was conducted on a sample of 32 subjects: 16 Alzheimer's patients and their caregivers. The results obtained after the multimodal rehabilitation program showed that the Alzheimer's patients had a more stable cognitive status and improved mood. Regarding the psychoeducational program, the results demonstrate the efficacy of such interventions in terms of increasing and preserving the caregivers' coping skills and enhancing their perception of the value of support groups.     

Expanding participation in Alzheimer's association Safe Return by improving enrollment

Every adult with a diagnosis of progressive dementia is at risk for wandering away or becoming lost. Those with dementia may not have the capacity to remember crucial contact information or recognize an unsafe situation, so enrollment in a program like Alzheimer's Association Safe Return is crucial. One facility-level enrollment plan at the James A. Haley Veterans Hospital in Florida has had a relatively high participation rate. A mailed survey was used to help evaluate that enrollment process and the results are described here. Of 262 respondents to the survey, 193 (74%) indicated the person with dementia enrolled in Safe Return. Potential enrollees need the following facilitators: perception of an unsafe situation, financial support and easy processing. Safe Return is not just focused on those who wander but is essential for all persons with dementia as these individuals can become lost in the course of normal daily activities.     

Clinical aspects of frontotemporal dementia

Frontotemporal neurodegeneration can cause three typical clinical syndromes: frontotemporal dementia (FTD), primary progressive aphasia (PPA) and semantic dementia (SD). In the present paper we review these syndromes, highlighting FTD. Four case examples are presented. At the early stage of FTD changes of personality and social conduct are prominent, whereas cognitive functions are relatively well preserved. Since the usual dementia tests are not sufficiently sensitive to disclose non-cognitive symptoms, clinical diagnosis as well as differentiation from non-organic psychiatric disorders can be difficult. Detailed history, thorough clinical examination, and neuropsychological testing are required to establish the diagnosis. EEG and functional brain imaging may be helpful. The choice of therapeutic options for FTD is extremely limited. Medications may be used to treat neuropsychiatric symptoms. There is little experience with non-pharmacologic behaviour modification and milieu treatment approaches. The problems that FTD imposes on caregivers are dissimilar to those arising from Alzheimer's disease. Families receive little or no support so that early nursing home admission of patients is common.     

Management of behavioral disorders in dementia patients

Behavioral disorders are major manifestations of Alzheimer's disease and other forms of dementia. They are associated with caregiver distress, increase the likelihood of institutionalization and may be associated with more rapid cognitive decline. The first step of treatment strategy is an assessment of these disorders. Treatment of behavioral signs is an etiological treatment. Acute behavioral signs are often related to an unknown somatic disease. Chronic signs are often symptoms of the neurological dementia and can be reduced, especially by serotonergic agents and anticonvulsivants. The new antipsychotics are a good alternative to classic neuroleptics known for their frequent cognitive side effects in demented patients. Anticholinesterasic drugs can positively influence noncognitive signs. The treatment of behavioral and psychological symptoms of dementia (BPSD) involves a number of specific interventions including cognitive stimulation which has shown effectiveness on both cognitive functions and quality of life. Prevention of BPSD includes safety measures such as evaluation of suicidality and violence, vigilance regarding neglect and abuse, planning for legal issues due to the patient's incapacity. Families or caregivers should be provided with counseling, education and support. The treatment of BPSD is part of a global and multimodal care which involves general practioners, nurses, social workers, physiotherapists, neuropsychologists, speech therapists, memory centers, psychogeriatric and geriatric units, and respite care units, nursing homes and long-term care facilities. The coordination of the professionals is a critical aspect of providing effective care for patients with Alzheimer's disease.     

Performance on the dementia rating scale in Parkinson's disease with dementia and dementia with Lewy bodies: comparison with progressive supranuclear palsy and Alzheimer's disease

BACKGROUND: The relation between dementia with Lewy bodies (DLB) and Parkinson's disease with dementia (PDD) is unknown. OBJECTIVES: To compare the cognitive profiles of patients with DLB and PDD, and compare those with the performance of patients with a subcortical dementia (progressive supranuclear palsy) and a cortical dementia (Alzheimer's disease). DESIGN: Survey of cognitive features. SETTING: General community in Rogaland county, Norway, and a university dementia and movement disorder research centre in the USA. PATIENTS: 60 patients with DLB, 35 with PDD, 49 with progressive supranuclear palsy, and 29 with Alzheimer's disease, diagnosed by either standardised clinical procedures and criteria (all PDD and Alzheimer cases and 76% of cases of progressive supranuclear palsy), or necropsy (all DLB cases and 24% of cases of progressive supranuclear palsy). Level of dementia severity was matched using the total score on the dementia rating scale adjusted for age and education. MAIN OUTCOME MEASURES: Dementia rating scale subscores corrected for age. RESULTS: No significant differences between the dementia rating scale subscores in the PDD and DLB groups were found in the severely demented patients; in patients with mild to moderate dementia the conceptualisation subscore was higher in PDD than in DLB (p = 0.03). Compared with Alzheimer's disease, PDD and DLB had higher memory subscores (p < 0.001) but lower initiation and perseveration (p = 0.008 and p=0.021) and construction subscores (p = 0.009 and p = 0.001). DLB patients had a lower conceptualisation subscore (p = 0.004). Compared with progressive supranuclear palsy, PDD and DLB patients had lower memory subscores (p < 0.001). CONCLUSIONS: The cognitive profiles of patients with DLB and PDD were similar, but they differed from those of patients with Alzheimer's disease and progressive supranuclear palsy. The cognitive pattern in DLB and PDD probably reflects the superimposition of subcortical deficits upon deficits typically associated with Alzheimer's disease.     

Olanzapine as a treatment of neuropsychiatric disorders of Alzheimer's disease and other dementias: a 24-month follow-up of 68 patients

Although the core feature of all types of dementia is progressive cognitive disruption, most demented patients also express noncognitive behavioral problems. These noncognitive problems lead to potentially devastating disabilities, and are often a major cause of stress, anxiety and concern for caregivers. Psychotropic drugs are frequently used to control these symptoms, but they have the potential for significant side effects, such as sedation, disinhibition, depression, falls, incontinence, parkinsonisms and akathisias. For 24 months, we monitored 68 outpatients suffering from Alzheimer's disease, vascular dementia, frontal lobe dementia, Parkinson dementia complex, and Lewy body disease. Our purpose was to identify the role and efficacy of olanzapine and the side effects which emerged during the treatment of behavioral alteration resulting from five etiological causes. This paper will discuss the results of this study, and will provide an overview of the existing literature.     

Progressive nonfluent aphasia with dementia: a case report.

We report a patient with progressive nonfluent aphasia and mild dementia. On 9-month follow-up evaluation, there was significant deterioration in both language and cognition. Unlike in Alzheimer's disease, the aphasia was of the Broca's type. In contrast with primary progressive aphasia, a dementia was present and the cognitive and language decline showed a rather rapid course.     

Treatment of sleep and nighttime disturbances in Alzheimer's disease: a behavior management approach

BACKGROUND AND PURPOSES: Sleep and nighttime behavioral disturbances are widespread in community-dwelling dementia patients, but little is known about the usefulness of behavioral interventions for treating them. This article presents data from three cases enrolled in an ongoing study of sleep problems in community-dwelling Alzheimer's disease (AD) patients: nighttime insomnia treatment and education for Alzheimer's disease. PATIENTS AND METHODS: All subjects received written materials describing age- and dementia-related changes in sleep, and standard principles of good sleep hygiene. Caregivers also received education about dementia, listings of relevant community resources, and general support. Subjects' sleep-wake activity was measured at baseline, post-test (2 months), and 6-month follow-up using an Actillume wrist-movement recorder, which was worn continuously for 1 week. RESULTS: Post-test actigraphic improvements in sleep quantity and sleep efficiency, number of nighttime awakenings, and amount of daytime sleep, as well as subjective sleep ratings were observed. One subject maintained improvements at 6-month follow-up. Subjects varied widely in the type of sleep problems reported and behavioral strategies implemented by family caregivers, illustrating the complexity that characterizes nighttime behavioral disturbances in AD. CONCLUSIONS: This paper provides clinical and empirical evidences that behavioral strategies including standard sleep hygiene recommendations can be helpful in treating sleep and nighttime behavioral disturbances in dementia patients.     

Group Parent Training: A Novel Approach for the Treatment of Eating Disorders

This paper describes the rationale, development, and implementation of a group parent training program designed to assist caregivers in the management of their child's eating disorder while facilitating the development of a healthy home environment for sustained change. The content of this program instructs caregivers in disorder management and capitalizes on caregivers as role models of adaptive behavior. Strategies are provided to address acute disorder management, features of caregivers that may impede task implementation, and environmental and attitudinal changes. The group format enhances social support, accountability, and self-efficacy. A preliminary qualitative evaluation and future directions are described to assist healthcare professionals in better meeting the needs of caregivers of these disorders.     

Group parent training: a novel approach for the treatment of eating disorders

This paper describes the rationale, development, and implementation of a group parent training program designed to assist caregivers in the management of their child's eating disorder while facilitating the development of a healthy home environment for sustained change. The content of this program instructs caregivers in disorder management and capitalizes on caregivers as role models of adaptive behavior. Strategies are provided to address acute disorder management, features of caregivers that may impede task implementation, and environmental and attitudinal changes. The group format enhances social support, accountability, and self-efficacy. A preliminary qualitative evaluation and future directions are described to assist healthcare professionals in better meeting the needs of caregivers of these disorders.