Dementia is characterized by a progressive loss of social and cognitive functions. During the course of the illness, people with dementia become increasingly dependent on the care of others. Both the number and severity of symptoms increase and daily functioning and participation in social activities become increasingly difficult. This sometimes leads to a situation in which care is needed over a 24 hour period [1
]. Care may be needed for a prolonged period of time, because the illness process usually extends over several years (seven years on average; [2
The ageing of the population is expected to lead to an increase in the prevalence of dementia [3
]. The amount of available professional care is, however, not expected to rise in line with the growing demand in the ageing population. As a consequence, people with dementia will become increasingly dependent on the care of informal caregivers, such as their spouses, their children, other relatives or friends. Informal care is not only provided when the patient is living at home [5
], but also when the person with dementia is admitted to a long-term care facility [6
The provision of informal care can be a serious burden for caregivers and can negatively affect their mental and physical health, particularly if care is provided frequently or for a prolonged period of time [7
]. The duration of caregiving before admission in a nursing home was the strongest predictor for the decreased perceived burden after admission [8
]. The most salient variables affecting the occurrence and timing of institutional placement for persons with dementia were the caregivers' depression scores and the care recipients' behavioral change scores over time [9
]. The longer period of time spent in caregiving could represent increasing demands of care and thus increased sense of burden.
This caregiver burden is not only associated with the provision of care, but also with the fact that informal caregivers have to learn to cope with the illness and changes in the behavior of the person with dementia. The progressive and often unpredictable course of dementia poses considerable challenges to informal caregivers. Carers reported losses at different levels within the family, and a range of methods used to cope with loss and to maintain their family functioning were identified [10
]. The majority of caregivers receives little informal support, has poor knowledge of available formal services, and has difficulty planning ahead for the relative’s future care needs. Caregivers themselves report a lack of preparedness to provide care [11
]. So, providing support to informal caregivers is therefore essential to promote their wellbeing and prevent serious caregiver burden.
In the Netherlands and other Western European countries, various professional support services, such as ‘Alzheimer meeting points for patients and relatives’, are available [12
]. In spite of this, informal caregivers’ needs for support often remain unmet, because they have difficulties finding the appropriate services and because professional care appears insufficiently attuned to informal caregivers’ needs [13
To be able to adequately support informal caregivers, insight into the problems they experience in caring for a person with dementia and in their needs for support, is crucial. Although some studies have addressed the needs of informal caregivers [13
], few have investigated whether informal caregivers’ problems and needs change during the course of the illness. The increase in illness symptoms may cause caregivers of persons in later stages of dementia to experience more problems and to have a stronger need for additional professional support than caregivers of persons with initial symptoms of dementia [16
]. On the other hand, it has been suggested that informal caregivers develop coping strategies and receive an increasing amount of professional support during the illness process, which may improve their ability to handle the changing condition and increasing needs of the person with dementia [17
]. The question arises, therefore, whether there are differences between informal caregivers’ needs and problems in various stages of the illness process. Answering this question is important to improve the tailoring of nursing care and other supportive services to informal caregivers’ needs. This paper therefore investigates whether differences occur between the initial stage and later stages of dementia in terms of (1) the problems experienced by informal caregivers in the provision of informal care, (2) the use of professional support by persons with dementia, and (3) informal caregivers’ needs for additional professional support.