Dementia Caregiver Information Needs: Research Design Study

Introduction and Research Purpose

This study aims to support caregivers of people with dementia through a structured process of information giving. The goal is to determine specifically what information those who 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 in order to provide the best possible care.

The primary question addressed by this research is what information caregivers want compared with what they actually receive, so that a meaningful 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. Determining what type of information caregivers of people with dementia truly need at the time of diagnosis — and evaluating the impact of a caregiver education program on their response to that diagnosis — is vitally important, as are the interactions they have with community agencies.

The research will also explore the impact that different styles of information giving have on those who care for individuals with dementia. In order to investigate these issues thoroughly, a multiple research design will be employed. A qualitative approach will be used, as it is best suited to answering questions that require greater depth of detail. The multiple design will consist of both statistical data collection and face-to-face interviews.

Participants and Recruitment

This 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 the condition. In order to be included in this study, the following criteria must be met:

The individual must be the primary caregiver of a person with dementia, regardless of whether the caregiver lives with the person 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 must have a confirmed diagnosis of dementia and must be no more than two years past the original diagnosis date. For the purposes of this study, the specific type of dementia will not be relevant.

Recruitment of participants will be through the Positive Caring Project. The researcher has access to this group as coordinator of the project and has obtained permission from both the local Alzheimer's Branch and the regional Alzheimer's Office to carry out a study involving these groups. Referrals for this project come primarily from a Memory Clinic. Referrals from this clinic are usually made early in the post-diagnosis period, and permission has been requested from the clinic to approach individuals to participate in this research.

Many of the projects have been held in or on the outskirts 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 participants are likely to come from both rural and urban settings and that their backgrounds will vary considerably. The age range will also vary, although it is largely expected that most caregivers will be over the age of 65. Some may have partners with early-onset dementia, but it is also likely that others will be caring for parents or older relatives who have been diagnosed with dementia.

Figures acquired from the last nine projects conducted indicate an expected age range of 45 to 75 years old and a gender distribution of approximately 40% male and 60% female. A repeated-measure design will be used, with the same participants examined at two specific points in time: 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 diminish and adjust. Ten participants from each Positive Caring Project will be recruited, and the project takes place three times per year.

Unstructured Interview Framework

As the aim of this study is to create a greater depth of information about caregivers' needs from their own perspectives, the choice of method is largely dictated by the information required. Unstructured interviews that are still guided will help to draw out more detailed material and will allow caregivers to provide meaningful input as to how the information they receive should be changed based on their needs. The primary strength of unstructured interviews is that they allow 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 enables them to discuss points that they feel are particularly significant. There will be no questionnaire used within the interviews, but a framework will be established around which each interview will be 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 could be given to them at the point of diagnosis.
6) How caregivers feel that 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 currently available to them, and whether they are aware of what services are available.

Questions 3 through 8 will also be repeated in the post-project interviews. This framework will ensure that all topics considered crucial to the research are covered and will also work to eliminate interviewer bias. While it is difficult to eliminate bias completely, being alert and maintaining self-discipline will serve to minimize it, allowing the interviewer to avoid leading questions and to aim for objectivity.

These interviews will take place in the participant's home at a time convenient to them, and interviews will be audio-recorded. They will last approximately one hour, and all participants will be told in advance how long the interview is expected to last. Prior experience 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 other methods. Given the time required per interview and travel between geographically dispersed participants' homes, it is unlikely that more than two interviews could be carried out in a single day. An experienced audio typist will be required to transcribe the recorded interviews. Data analysis and storage will be computer-based, so transcripts will need to be entered into a word-processing program compatible with the data analysis software.