Longitudinal study "Stress on caring relatives of dementia patients" (LEANDER)
The demographic development shows a clear increase in life expectancy and this process continues. In particular, there has been a considerable increase in the number of very old people. In 2000, the share of over-80s in the population was 3.6 %, 6.3 % is forecast for 2020 and 11.0 % for 2050 (Fourth report on the situation of the older generation, 2002). This pleasing change in life expectancy is clouded by the fact that old age is often associated with the need for long-term care. Among women aged 80 to 84, this affects 38%, and among women over 90 65 % (men 42 %). The need for long-term care is caused by a large number of chronic illnesses, which increase with age. Dementia, which is strongly age-related, plays a prominent role in this. The prevalence rate for dementia among the over-65s is 7.2%, among the 85-89s it is 24% and among the over-90s 35% (Bickel, 1999). This means that about 900,000 people in Germany suffer from moderate or severe dementia. Including the lighter degrees of severity, which are difficult to measure in epidemiological studies, there are about 1,100,000 people. Since causal drug therapies are not available and cannot be expected in the foreseeable future, a significant increase in dementia patients is to be expected.
The dementia syndrome is usually progressive and affects many higher cortical functions, including memory, thinking, orientation, reasoning, arithmetic, learning, language and judgment. Cognitive impairment is usually accompanied by deterioration in emotional control, social behaviour or motivation. As a result of the symptoms described, impairments in the personal activities of daily life such as washing, dressing, eating, personal hygiene, body excretions and the use of the toilet often occur. The care tasks to be performed initially depend on the respective impairments in the (extended) activities of daily life (e.g. dealing with the authorities, financial matters, shopping). With increasing illness duration, the basic skills (eating, speaking, stool and urine control) can no longer be independently mastered by the patient. In addition, the above description of the symptoms makes it clear that the care of a dementia patient is associated with very special requirements.
In addition to the nursing tasks, the time and financial restrictions and the confrontation with behavioural problems and cognitive losses, being together with a dementia patient means a slow farewell to the loved one associated with feelings of sadness. In view of an increasing proportion of people suffering from dementia in old age and an assumed decline in the family "care reserve", the formal assistance system (e.g. outpatient care services, day care facilities) is becoming increasingly important. In the case of an extremely high need for care, which inevitably arises in the course of the illness in an elderly person with dementia, institutionalisation can only be avoided if family members are also involved in the care in addition to professional support. It will be crucial to tailor professional outpatient and day-care services for the elderly to the needs of dementia patients and their caring relatives, some of whom are under great strain.
Study design and implementation
The longitudinal study on the burden of caregiving relatives of dementia patients (LEANDER) aims to improve quality assurance in care for the elderly. The situation of the caring relatives of people with dementia is recorded on a large sample (N = 888) in a stress-theoretically sound and differentiated manner. The aim is to determine differences in the care-related burden depending on the central characteristics of the care situation (gender, kinship, stage of dementia) in order to develop intervention measures tailored to needs.
In the first phase of the project, a standardised questionnaire based on stress theory was developed which, due to its high ability to differentiate and its sensitivity to change, is particularly suitable for mapping the burden on caregivers and for assessing the effectiveness of relief measures.
Project reports
- LEANDER I
- LEANDER II (Full Report)
- LEANDER II (Short)
- EVA
Description of subprojects
- Overview of the longitudinal study on the burden on caregiving relatives (LEANDER I, II, III)
- Predictors of Morbidity and Mortality in Dementia Patients and Nursing Families (LEANDER III)
- Implementation of the "Berliner Inventars zur Angehörigenbelastung - Demenz (BIZA-D)" into practice: A training programme for employees in outpatient and inpatient geriatric care (LEANDER III)
- Longitudinal study on the burden on caregiving relatives (LEANDER II)
- Development of the Berlin Inventory on Relatives Burden - Dementia (BIZA-D) (LEANDER I)