Caregiver strain and stress in Alzheimer's disease caregiving

Caregivers of Alzheimer's Patients

Community Health Promotion Project Design

As we have discovered in the first part of the study, Alzheimer's is a major health issue for the population of seniors 65 years and older. Alzheimers costs taxpayers and individuals billions of dollars for the provision of care for those who can no longer care for themselves. Alzheimer's is an expensive disease and many times it is the family who must bear much of the expense. We found that the financial strain of caring for someone who has Alzheimer's creates an incredible amount of stress on family members. However, we also found that perhaps even greater than the financial strain, Alzheimer's places in incredible load on the family as they are usually the ones who must care for their family member.

The aggregate for this study consists of family members who must care for other members of the family who have Alzheimer's. Currently, it is estimated that nearly 15,000,000 unpaid caregivers exist in the United States caring for family members who have Alzheimer's. Caring for a family member with Alzheimer's not only increases a stress level associated with caring for the family member, but also increases a stress level of the caregiver in general. The survey for this needs assessment targeted family members living with and caring for an Alzheimer's patient. This aggregate population has not received sufficient academic attention in the past.

Results

The study used the MBRC to assess how caregivers were handling the job from several different perspectives. It is assesses them psychologically, health wise, and socially. This survey instrument exists in many different forms. The one chosen for the study was the one most commonly used in nursing homes for overall assessment purposes. The survey consists of 19 questions that are broken down into four different categories. All four of these categories provide a comprehensive assessment of the caregiver.

Data sources for the study were derived from hundred survey respondents who are caring for someone that had at least one family member diagnosed with early stage Alzheimer's. Nearly 80% of those surveyed responded that they were unsure if their loved one was receiving proper care, or if they were doing everything they could do for them. Nearly 40% reported a strained relationships with the Alzheimer's patient due to the demands that the patient placed on them. Nearly 36% indicated that they felt resentful or angry towards the patient. An overwhelming 68% of those surveyed reported feeling blue or sad more often. Caregivers also reported less pep are energy, that they were bothered by aches and pains, and more nervous than usual. The results of the study indicated a high level of caregiver strain associated with caring for the Alzheimer's patient. Results of the study indicate that caregiver strain is almost as significant a problem as Alzheimer's itself.

Questions 1 through 4 were summed to achieve a caregiver mastery score. The total possible points for the section was 12. The mean score for the group was a 10. This indicates and that a vast majority of those surveyed did not feel that they were achieving the level of care that they wished for their relatives, or that they understood what can be done for them.

The relationship strain score was assessed by totaling question numbers 5-9. This too had a possible 12 points total. The means score on this group of questions was an 8. This indicates the relationship strain is another area of concern for this group of patients. Very few indicated that they did not feel the relationship with the patient was strained.

The first two groups of questions indicated a high degree of stress that stems from caring for relative with Alzheimer's. Taking this into consideration, it is not surprising that many indicated a high health strain score as well. In this category the mean and most frequent score was also a 10. Caring for an Alzheimer's patient places additional psychological strain, relationship strain, and these in turn have an affect on the caregivers overall health. They reported a high number of common ailments that are normally associated with nervousness and stress.

The final category is the social strain score. The scoring on this section is difficult to interpret. Out of a possible 10 points, a 10 would indicate that the caregiver participated in those activities less often than they normally would if they were not caring for the patient. A score of five would indicate they participated in the same level of activity they would have if they were not caring for the patient. A score of zero was indicated as "strongly disagree." This answer is rather obscure, considering the other two answer choices that were given. If the person strongly disagrees that they participated in those activities, then a score below five would indicate that they did not participate at all. This means that a score of 0 to 5 means they didn't participate it all, a score of 0 to 5 indicates that they participated the same amount of time, and a score of 5 to 10 would indicate that they participated less often. It is not known what the reason is for the inclusion of the choice "strongly disagree" in this case. For the purposes of the study, this answer will be disregarded.

The problems associated with the social restriction score negatively affect the ability to assess this portion of the study. It significantly impacts the validity and reliability of the study instrument. Nonetheless, approximately 62% of those surveyed indicated that they participated less in social activities less often than they normally would have due to the responsibilities of caring for the patient. However, as far as assessing those whose activity level remained the same or who did not participate in these activities at all, there is no means to assess this data using this study method.

Several gaps were found to exist in the data that are a direct result of use of the MRBC. One of the key gaps in the data is that the survey did not include the use of demographic data. It is not known if demographic factors had an effect on the amount of strain placed on caregivers in all three of the categories. It is possible that a majority, or significant number, of the survey participants was from a certain demographic category and that this had the effect of introducing bias into the study results. Without the use of demographic data, it is difficult to determine if this were the case. The failure to include demographic data significantly reduced the reliability and validity of the study. It is not known if the results can be applied to the general population beyond the study sample group.

Recommendations

Results of the study indicate that a significant need exists that addresses health, mental health, and social issues resulting from the care of a family member with Alzheimers. The topic of Alzheimers in patients is addressed by Healthy People 2020 and is the topic of a World Health Organization task force. However, the topic of caregivers was not addressed by either of these agencies. This represents significant gap in programming to address this significant issue. The number of caregivers is growing due to the aging of the baby boomers. Resources have to be developed that will allow caregivers to cope so that they can take care of themselves, and better take care of their loved one with Alzheimer's.

The REACH conceptual model suggests that a number of interventions may be effective in reducing caregiver stress and alleviating many of the problems found during the course of this needs assessment. Community-based programs need to be established where caregivers of all Alzheimer's patients can receive education, groups that help them meet with other caregivers and to provide resources, individual therapy and counseling if needed, and perhaps a chance for social activities by providing a network of persons who are able to step in to allow the caregiver some respite.

The most significant finding of this needs assessment is that programs need to be developed that address the stresses of caregivers for Alzheimer's patients. The REACH model indicates that a number of different sources need to be available, because different interventions are needed for different caregivers in caregiver personalities. A wide base of community resources would help to reach the greatest population and the greatest number of caregiver types. This topic was not included on the Healthy People 2020 nor World Health Organization agenda, but it should have been. This gap in services must be addressed in the future, both for the benefit of the patients and for those who meet their needs and care for them on a daily basis. The establishment of such a program is essential in the future.