Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme

The Dutch Alzheimer's Association ordered the Netherlands Institute for Health Care Services Research (NIVEL) to develop a questionnaire focusing on informal caregivers' problems and support needs, related to the 14 problem areas formulated in the National Dementia Programme. The development trajectory of this questionnaire consisted of the following steps: (1) a literature search focusing on existent instruments regarding dementia care, (2) consultations of several experts in the field of dementia care and (3) focus group discussions with informal caregivers. A draft questionnaire was tested on comprehensibility and applicability among 15 informal caregivers in different regions of the Netherlands.

The core parts of the questionnaire measures from the perspective of the informal caregiver (see Additional file 2):

(1) 14 problem areas, subdivided in 30 questionnaire items on problems that are faced by persons with dementia and problems experienced by informal caregivers;

(2) the importance of these problem areas, according to the informal caregiver;

(3) the informal caregiver's needs for additional professional support (56 items) [18]. In addition, the questionnaire asked about background characteristics of the informal caregivers themselves (gender, age, living arrangements, relationship with the person with dementia, type, frequency and duration of the informal care) and about characteristics of the person they cared for (gender, age, living arrangements, since when has the person shown signs of dementia and the use of professional support). The items about perceived actual problems (see (1) above) and the importance of these problems (2), were formulated as a statement after which informal caregivers had to indicate whether they experienced these problems in the last two months ('yes', 'actually yes', 'actually no', 'no' or 'not applicable') and how important the problems were at the moment ('of paramount importance', 'very important', 'important' and 'not so important').

As said, the questionnaire also asks whether caregivers have needs for specific types of professional support. These needs (3) are expressed in a list of suggestions for support, each directly linked to a particular problem area.

The reliability of the questionnaire in terms of internal consistency (Cronbach's alpha) was high: a = 0.81, based on the questions on the informal caregivers' perceived importance of the 14 problem areas at this moment.

We also evaluated the questionnaire on the basis of a few additional questions for informal caregivers about the clarity of the questionnaire and the applicability of the questions on the informal caregivers' situation. This evaluation demonstrated that the questionnaire was comprehensible and applicable to informal caregiver of persons with dementia in various situations (living at home, in a home for the elderly or nursing home). Besides, the questionnaire appeared to be suitable to informal caregivers who take care of persons with dementia in different phases of the illness.

The questionnaire was distributed amongst informal caregivers by volunteers of the Dutch Alzheimer's Association (executive partner in the National Dementia Programme). One of the strategies of the Dutch Alzheimer's Association is training volunteers in supporting persons with dementia and their informal caregivers, e.g. by providing information, advice, counseling and advocacy.

Informal caregivers were recruited by 120 volunteers trained within the National Dementia Programme, during several activities organized by the Dutch Alzheimer's Association in the period April 2006 - January 2007: "Alzheimer Cafés", information meetings, focus groups and support groups for informal care givers (of about 10-15 participants in each group). The volunteers based their recruitment and information strategies on the procedures described in the questionnaire manual [18]. Informal caregivers were asked to complete the questionnaire immediately or at home, after volunteers had provided structured verbal and written information about the aim and background of the study.

A total of 984 informal caregivers of persons with dementia completed the questionnaire. The volunteers of the Dutch Alzheimer's Association did not systematically register how many informal caregivers they approached for completing the questionnaire (estimations are about 5000 - 6000 informal caregivers approached), which hampers the calculation of a reliable response rate.

All parts of the Netherlands (south, north, middle and east) are represented in the research group. Background characteristics of the 984 informal caregivers and of the persons with dementia they care for are presented in table 1.

For answering research questions 1 and 2 (about the actual professional support received and about the caregivers' needs for additional support) descriptive analyses were performed. To answer research question 3, we used chi-square tests to test the relationship between the specific types of informal caregivers and their needs for additional professional support and to test the relationship between the living situation of the person with dementia and the informal caregivers' needs. The criterion for statistical significance was p < 0.05.

SPSS version 14.0 for Windows was used for the descriptive statistics and the chi-square tests.

Half of the informal caregivers in our study were spouses of the person with dementia (50.8%); in about one third the son or daughter (in-law) is the caregiver (38.2%). About three quarters of the informal caregivers are female (71.6%). The mean age of the informal caregivers is 62.8 years: the youngest informal caregiver is 16 years old and the oldest is 101 years. Almost all the informal caregivers look after their spouse or parent at least once a week (95.0%). More than half of the informal caregivers look after the person with dementia every day (54.8%). In addition, half of the informal caregivers provided care to the person with dementia on their own, with no or only little assistance from other relatives or acquaintances (51.9%).

Most of the persons with dementia are living at home with their spouse or in the household with their son or daughter (69.0%; see Table 1), and one third of the persons with dementia live in a nursing home or home for the elderly (31.0%). Almost six out of ten persons with dementia were female (57.7%; see Table 1). The mean age is 78.2 years: the youngest person with dementia is 42 and the oldest is 101 years old.

We asked the informal caregivers to what extent they receive professional support in the care for their relative: 92.6% did receive some kind of support (see Table 2). Almost four out of ten (37.1%; not in table) informal caregivers of people with dementia who are living at home receive support with the physical care for their relative, got support with the house keeping (45.0%) or their relative received medical dementia care (29.5%). Almost two third of the people with dementia (63.6%) visit a day-care centre or a meeting centre for persons with dementia for social and emotional support.

Although almost in all cases already professional support was being received (see Table 2), two thirds (67.4%) of the informal caregivers indicated that they had one of more needs for additional professional support. Informal caregivers relatively often report they need advice about what to do when their relative with dementia is frightened, angry or confused (28.8%; see Table 3). Almost one out of five informal caregivers report they need to learn how to cope with changes in the behavior of the person with dementia (18.6%) and that they need more information about the professional help and support available in the region (18.6%). However, the specific types of additional professional support needed vary for the total research group. Besides, there are significant differences between informal caregivers of persons with dementia living at home and informal caregivers of people with dementia who are living in a nursing home or home for the elderly. Informal caregivers of persons with dementia who are living at home more often need someone to look after their relative with dementia, how to cope with behavior problems of the person with dementia; they also need more information about the legal amends in case of admission of the persons with dementia and more information about professional help and support options in their region (see Table 3).

The amount of additional professional support needed is also related to whether the person with dementia lives at home, in a nursing home, or home for the elderly. Almost three quarters (73.2%; see Table 2) of the informal caregivers of persons with dementia who are living at home have one or more kinds of need for additional professional support. This percentage is significantly lower for informal caregivers of dementia persons who are living in a nursing home or home for the elderly: 55.9% of these informal caregivers have one or more kinds of need for additional professional support (chi-square; p = 0.000).

We already noticed that informal caregivers relatively often need additional professional advice about what to do when their relative with dementia is frightened, angry or confused. In this regard there is a significant difference between spouses and sons or daughters in law: 23.3% of the spouses and 35.8% of the sons or daughters (in-law) in our study reported that they need more advice on how to handle such behavior problems (chi-square; p < 0.05; see Table 3). However, with regard to certain other support needs, there are more significant differences between spouses and sons or daughters (in-law). Spouses' needs often concern emotional support (16.4% of the spouses versus 10.2% of the sons or daughters (in-law)) and they report to need someone to take away the feeling that they are the only person to look after their relative (17.2% of the spouses versus 10.2% of the sons or daughters (in-law)). Sons or daughters (in-law) relatively often report that they would like more information about the progression of the illness dementia (21.2% of the sons or daughters (in-law) versus 13.8% of the spouses). They also have a relatively greater need for better coordination between professional support and informal care (20.2% of the sons or daughters (in-law) versus 12.6% of the spouses) and need to have more consultation with the professional caregivers (18.0% of the sons or daughters (in-law) versus 11.3% of the spouses). However, spouses (20.2%) more often than sons or daughters (in-law); 11.0%)) have a need for information about the legal amends when their relative is admitted in a nursing home or in a home for the elderly.

The sample of our study is large and represents informal caregivers of persons with dementia in various settings (at home, in nursing homes or in homes for the elderly). Main characteristics of the persons with dementia who were cared for by the informal caregivers in our sample appear to be in line with characteristics mentioned in a prominent report of the Health Council of the Netherlands [21]. This report indicates that about 65% of the persons with dementia lived at home, while the other 35% lived in a nursing home or in a home for the elderly (in our study 69.0% versus 31.0% respectively). According to the Health Council, the mean age of persons with dementia is about 79 year (in our study 78.2 years).

A limitation of our study is, however, that we do not know how representative the investigated informal caregivers themselves were. The fact that the informal caregivers who completed the questionnaire were recruited at information meetings, focus groups or support groups may have caused selection bias. The way of recruitment implies that all informal caregivers participating in our study are already acquainted with a certain level of support. Findings may therefore not be generalized in all regards to informal caregivers who do not yet take part in activities such as information meetings, focus groups or support groups.

On the other hand, the sample of our study is large (N = 984) and represents informal caregivers of persons with dementia in different settings (at home, in nursing homes or home for the elderly) and also involves different types of informal caregivers e.g. spouses, daughters or sons (in-law) and other relatives. Therefore the results may be relevant for informal caregivers in different situations.