caregivers of those with dementia through a structure process of information giving. The goal is to determine specifically what information those that care for people with dementia want at the time of diagnosis. It is also necessary to examine the discrepancies between the information that these individuals receive and the information that they actually need to care for the individual in the best way possible. The primary question dealt with in the research is what information that these individuals want and information that they actually receive so that a comparison can be made between the two.
Describing and analyzing the perspectives of caregivers regarding their information needs is the main purpose of this research. Being able to determine what type of information caregivers of those with dementia really need at the time of diagnosis and being able to evaluate the impact of a caregiver education program for dementia on the caregivers' response to the diagnosis is vitally important, as are the interactions that they have with community agencies. The research will seek to explore the impact that different styles of information giving have on those that care for individuals with dementia. In order to investigate these issues thoroughly a multiple research design will be needed. A qualitative approach will be used as it is best suited to answering many of the questions which require a greater depth of detail. The multiple design will consist of both statistical data collection and interviews.
This particular study will examine and follow three groups of caregivers through three separate Positive Caring Courses and will also use participant observation and face-to-face interviews. The sample group will therefore consist of approximately 30 caregivers of people who have been diagnosed with dementia and are in the early stages of it. In order to be included in this study the following criteria will be required:
The individual must be the primary caregiver of a person with dementia regardless of whether the caregiver lives with this individual or in a separate dwelling.
The individual must not be participating in any other educational program or support group linked to dementia awareness throughout the entire period of the research.
The individual being cared for will be required to have a diagnosis of dementia and will be no more than two years past the original diagnosis date. For the purposes of this study the type of dementia that the individual was diagnosed with will not be relevant.
Recruitment of the participants will be through the Positive Caring Project. The researcher has access to this particular group as coordinator of the project and has obtained permission from both the local Alzheimer's Branch and the regional Alzheimer's Office in order to carry out a study involving these groups. Referrals for this project come primarily from the Julian Hospitals Memory Clinic. Referrals from his clinic are usually early in the post diagnosis period and permission has also been requested from the memory clinic in order to approach individuals to participate in this research.
Many of the projects have been held in or on the outskirts of the city of Norwich, however the geographical intake has been very wide and now covers much of the county. This is indicative of the fact that many of the participants are likely to come from both rural and urban settings and that their backgrounds will vary greatly. The age range will also be varied although it is largely expected that most of the caregivers will be over the age of 65. Some of these individuals may have partners with early onset dementia but it is also likely that there will be individuals who are caring for their parents or for older relatives who have also been diagnosed with dementia.
Figures acquired from the last nine projects that have been conducted indicate an expected age range of 45 to 75 years old and a gender mix of 40% male to 60% female. A repeated measure design will be used and the same participants will be examined at two specific points in time. These will be two weeks before the beginning of the project and four weeks after the project has concluded. This will allow time for many of the immediate influences of attending the project to wear off and adjust themselves. Ten participants from each Positive Caring Project will be recruited and the project takes place three times per year.
As the aim of this study is to create a greater depth of information about caregivers' needs from their particular perspectives the choice of method is largely dictated by the information that is required. Unstructured interviews that are still guided will help to draw out more detailed material and will allow caregivers to have positive input as to how the information that they receive should be changed based upon their needs. Primarily, the strength of unstructured interviews are that they allow the participants the opportunity to explain issues and to clarify points in a face-to-face setting. They are also very useful for allowing participants to respond in their own words which allows them to discuss points that they feel are extremely significant to them. There will be no questionnaire used within the interviews but a framework will be established around which the interview will the guided. The framework will cover the following key areas:
1) How caregivers are told about the diagnosis.
2) What information was specifically given to them at the point of diagnosis.
3) How caregivers think that information about the diagnosis should be delivered.
4) How caregivers actually feel about the diagnosis and prognosis they receive.
5) What caregivers think would be the most useful information that they could be given at the point of diagnosis.
6) How caregivers feel that the professionals could be more helpful to them.
7) What practical suggestions these caregivers may have to improve services.
8) What caregivers feel about the services that are currently available to them, and are they aware of what services are available to them.
Questions 3 through 8 will also be repeated in the post project interviews. This framework will work to ensure that all of the topics that are considered crucial to the research are covered and will also work to eliminate any interviewer bias. It is difficult to eliminate bias completely but being alert and having a level of self-discipline will serve to minimize it. This will allow the interviewer to avoid leading and will aim for objectivity. These interviews will take place in the participant's home during a time which is convenient to them and interviews will be taped. They will last approximately one hour and all of the participants will be told in advance how long the interview will likely last.
Prior experience on the part of this researcher has indicated that face-to-face interviews do require extra time. Travel to the participant's home and conducting the interview in that setting often takes longer than any other method. Considering the time limit on the interviews and the drive between different participant's homes it is quite unlikely that any more than two interviews would be able to be carried out in one day. This is especially true for cases that are dispersed geographically. An experienced audio typist will be required for secretarial support to transcribe the recorded interviews. Data analysis and storage will be computer-based so transcripts will be required to be placed into a word processing program which will be compatible with the data analysis software.
Statistical data will be collected by the researcher which will detail the prevalence of dementia in the UK. This will deal with the numbers of people with dementia in each Primary Health Care Trust and the comparison of these figures to the service provisions available within each Primary Health Care Trust.
There will be a very large volume of information generated by this study and therefore hardcopy management will prove difficult. Due to this fact, the data will be stored and analyzed on computer which will make it easier to manage, store, and retrieve. Transcripts from the various interviews with the evaluated continually in order to identify any common themes and to develop insight into many of the perceived needs and experiences of the caregivers who are involved in the study. This will work to clarify the relationships among concepts as they emerge. In order to ensure privacy and security, the computer will be password sensitive and two copies of the data will be kept in secure locations that are separate from one another.
Strengths and Weaknesses of the Research
As with all studies there are strengths and weaknesses to this one. The study works to elicit a greater depth of information from the caregiver's perspective then has previously been seen and will also allow the voices of the caregivers to be heard. Since the data will be becoming directly from the experiences of these individuals the insights that they provide will work to contribute to a change among…