Measuring the needs of dementia patients' caregivers: An assessment study from King Abdul-Aziz Medical City, Jeddah, Saudi Arabia

Ethical statement

After receiving approval from the ethical and scientific committees of King Abdullah International Medical Research Center at King Abdul-Aziz Medical City (approval number IRB/1767/22), the data-gathering procedure began and lasted for two months (September and October 2022). The anonymity of the data of the participants was maintained throughout the study. Written informed consent was obtained from participants, to participate in the current study.

Study area and setting

This study was a cross-sectional study and was carried out in two cities, Jeddah and Taif, which are covered by the home care services of King Abdul-Aziz medical city. Home care services at King Abdul-Aziz medical city strive to provide health care assistance and nursing services for patients at their residences. Older adult patients are not the only target group for these services; there are other groups including patients with cancer, Alzheimer’s disease patients, and patients who had car accidents or head injuries resulting in a dementia diagnosis.

Study subjects

The study recruited the dementia patients’ caregivers who met the following inclusion criteria: Saudi nationality with more than 18 years of age, who had direct close care with their patients for a minimum of six months.

Sample size

Permission was granted from the home care department of King Abdul-Aziz Medical City to utilize their database, which consisted of a dementia patients list, including personal information about patients and their caregivers. Access to this database was only provided through permission from King Abdul-Aziz Medical City. However, it was used as a matrix to withdraw the sample through a convenient sampling technique.

The total number of dementia patients was 336 who had routinely scheduled health homecare visits and nursing services at their residences. After applying the inclusion criteria, we assumed that there would be one caregiver for each patient. All caregivers were invited to participate in the study remotely via mobile calls. Then, when we obtained their verbal approval to participate, we provided them with the consent form during the home care visits.

Sampling technique

By a convenience sampling technique (non-probability Sampling) and during the home care visits, a team of three researchers conducted the interview questionnaire at the caregivers’ residences. The information technology (IT) section assisted in designing an electronic Arabic questionnaire integrated into our iPad to collect the data. All team members were trained and oriented to the objectives of this study. The team handled the following: explaining the aim of the study to the participants, obtaining informed consent from the participants, and answering the inquiries or questions concerning the questionnaire.

Data collection methods, instrument used, and measurements

Variables

There were two variables included in this study: Dependent variables, where the needs of the caregivers of patients with dementia were considered; and independent variables, which included characteristics such as age, gender of caregivers, level of education, employment status, medical history of caregivers, relation to the patient, living situation, income, duration of giving care to patients, and stage of dementia (Alzheimer’s diseases).

Needs of dementia patients’ caregivers

Most dementia patients have family members who provide a different level of care and support. This kind of informal care is unpaid and always has characteristics of a particular scope of work, duration, and intensity if offered to older people with chronic comorbidities. Therefore, the caregivers are considered ‘secondary patients’ who deserve protection and guidance to become more competent and safe helpers for their loved ones. According to a prior systematic review,¹¹ no standard measure addresses all of the important needs of patients with dementia and their caregivers. Nevertheless, the Carer’s Needs Assessment for Dementia (CNA-D) is identified as a comprehensive tool for measuring the degree of severity and burden of the perceived needs in three main domains (Knowledge, practice, satisfaction with the health services and support).¹³

Questionnaire

The questionnaire of this study was interview-administered and consisted of two sections as outlined The first section consisted of the following demographic data: caregivers’ characteristics including age, gender, level of education, relation to the patient, living situation, and duration of giving care to patients. It also included the patient’s characteristics for age, gender, and duration from diagnosis (less than one year- one year to two years- more than two years). The second section included the assessment of the caregivers’ needs for patients with dementia, which was adopted from the Carers’ Needs Assessment tool for Dementia (CNA-D) and the Family Inventory of Needs (FIN) questionnaire.¹⁴ The CNA-D was developed and validated in 2005 and used to assess whether the required needs were addressed or not. We utilized these tools as a benchmark, it was validated, and we created a structural questionnaire from both of them in order to achieve our objectives. For the face and content validity, the questionnaire and related questions were translated into Arabic and then to English and then to Arabic again, and for revision, it was sent by email to the expert panel of specialists in family medicine, geriatric, community medicine, and mental health. The pilot study of 20 random participants was conducted in outpatient clinics of King Abdul-Aziz Medical City to measure the internal consistency (reliability) of the created structural questionnaire. The pilot also tested whether the questionnaire was comprehensible, clearly understood, and presented in a consistent manner. Patient information statements and consent forms were also tested for comprehension. The Cronbach alpha coefficient was 0.76, indicating good reliability.

The questionnaire contains 13 items, each rated on two subscales. The first subscale measured the importance of 13 care needs (the response options ranged from one (not important) to five (very important). The second subscale measured whether those needs rated as important have been met, partly met, or not met.

Data management and analysis plan

The SPSS statistical software program for Windows was utilized for data entry and statistical analysis (version 20.0; IBM Corp., Armonk, NY, USA). Data entry and coding stages were performed for quality control purposes. Data were presented using frequencies and percentages for qualitative variables, and for quantitative variables, means and standard deviations were used. A Chi-square test was performed to compare variables among participants’ responses and their demographic data.

Characteristics of the study subjects

Of the study population, 276 caregivers of dementia patients completed the questionnaire (response rate was 82%). Their mean age was 38 years, ranging from 21 to 67 years. Slightly more than two-thirds of the caregivers were female. Almost one-half of them had a level education of a bachelor’s degree (53%), and only 8% had a postgraduate degree. The most striking observation from the data was that most caregivers (71%) did not live in the same house as their patients (Table 1).

Two-thirds of caregivers in the present study spent more than one year on direct caregiving. Almost half of the patients with dementia were grandparents (Figure 1). Males constitute a large proportion of dementia patients (60%), and more than two-thirds have had dementia for more than two years (Table 1).

Figure 1. Caregivers’ percentages based on the patient’s relationship with them (A) and the duration of their caring (B).

Important caregivers’ needs and unmet needs

Table 2 shows that all 13 needs were considered important by caregivers, and the majority (90%) indicated that knowing the exact outcome of dementia is important. However, 26% of them stated participation in group psycho-education was of low importance.

Furthermore, almost a third of caregivers acknowledged that some needs were considered important but were not implemented, such as frequent home care visits, the availability of hotline services in emergencies, providing temporary assistance with the patient’s care at home, and receiving training in fundamental nursing skills at home.

The relationship between the demographic characteristics and the four most important needs according to the participants’ answers

Regarding the association between the needs that most of the caregivers rated as important compared with other needs and their demographic characteristics (Table 3), demonstrates a statistically significant difference between the older caregivers and the need to have help to take care of their patients. Moreover, the Chi-square test did not show significant differences between the gender of caregivers and their needs. Interestingly, the highly educated caregivers reported that knowledge about the diseases was important, compared with illiterate caregivers who indicated that assisting in caring was more important than knowledge.

Furthermore, Table 3 illustrates that according to caregivers, dementia patients who were grandparents and did not live in the same house require more assistance in caring from the healthcare system. However, providing temporary help with the patient’s care at home and having more frequent home care visits to caregivers was not reported as important by almost a third of caregivers in the present study if the length of caregiving was more than two years.