Dementia is often regarded as a disease of old age. However, there is also a group in which the symptoms of the disease develop before the age of 65. Prevalence rates of early onset dementia (EOD) have been reported to range between 54 and 260 cases per 100,000 in the 30-64 age group [1–3].
EOD is recognized as an important psychosocial and medical health problem with serious consequences for patients and their families [4, 5]. EOD is more difficult to recognize than late onset dementia (LOD) in the early stages of the disease because of the lower prevalence rate, the wider range of etiologies [6, 7] and the use of other mental health services (e.g., community mental health teams). These factors cause an important delay before an accurate diagnosis can be established, commonly resulting in feelings of insecurity and frustration for both patients and their families . A proper diagnosis is an important prerequisite for receiving adequate (in)formal support and health care services.
EOD also may have a different clinical manifestation than LOD due to the relatively high prevalence rate of frontotemporal dementia (FTD), in which problem behavior is more prevalent as the presenting sign of probable dementia [6, 7]. Recent research on the impact of problem behavior on caregivers and vice versa shows that these specific aspects of the dementia, more so than cognitive and functional changes, have severe consequences for patients and their family members . Problem behavior is the most important risk factor for caregiver burden and is a strong predictor of institutionalization [10–12] but is also an important starting point for interventions . Recent studies have shown that psychological factors, such as disease awareness , and environmental factors, such as caregiver management strategies , influence the development and persistence of problem behavior in LOD. Similar studies on EOD have not yet been conducted.
Furthermore, EOD patients are in a life phase in which they often have an active role in society and often have young children. The loss of roles and responsibilities is, therefore, greater than in older people. They also have to deal with specific issues such as marital problems, family conflict, (un)employment and financial issues . Furthermore, many EOD patients of the post-war baby boom generation grew up in a society that is very different from that of the older generation. The needs of EOD patients may, therefore, be different and demand a different approach than in LOD.
Despite these differences, the availability of specialized healthcare services is still limited in most countries, forcing EOD patients and their family members to use services designed for the elderly. In the Netherlands, specialized services are available, but their geographic distribution is limited, as is the range of services offered. Furthermore, specific knowledge on the characteristics and needs of EOD patients and their families is lacking but prerequisite for the development of suitable health care services. Adequate diagnostics, (in)formal support and services like support groups, day care facilities or respite care may help patients and their families cope with the situation and may even postpone institutionalization. This multidisciplinary research project focuses on the course of EOD, the functional characteristics of EOD patients, the needs of EOD patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment. We expect that the study will yield important data that can be used to design specific guidelines and improve the development of health care services for EOD patients and their families.