Support groups for caregivers of dementia patients in Saudi Arabia: Obstacles and opportunities Sara Al-Rasheed Director of Health Education & Patient Affairs Saudi Alzheimer’s Disease Association

Why did we need such a study? The Saudi AD Association established its first support group in 2013 based on demands communicated by caregivers. The attendance was far less than expected.

The Objective! To identify factors associated with relatively poor attendance in our support groups meetings. Group factors? Contents factors

Methodology Literature review. Performed a sample of our own. Set success rates such as: Having a minimum attendance of 8 members per meeting. An attendance rate of 60% per member in a series of 10 consecutive lectures. Announced our support group via lots of methods. Which means that the member should at least attend 6 meetings out of 10.

How did we announce it?! All announcements regarding the support group were via: 1- Text messages to all the database we have for the caregivers, and to all those who attended the first session. The later were email for every single meeting even if they didn’t attend after their first meeting. 2- An email was sent to all the database of caregivers, to all our strategic partners , to all the doctors and members of the scientific board, and to all the members and volunteers of the association. 3- A phone call was made to invite all the database of the caregivers, and to all those who attended the first meetings. A phone call was also the method to confirm the attendance of the caregivers. 4- Announcements were published on our official Twitter account.

The sample size Our support groups contained a 11 male and 11 female caregivers of Alzheimer’s disease patients who suffered from dementia. These 22 members were handpicked after meeting the all the caregivers in an icebreaking meeting that contained 28 male and 36 female caregivers.

Caregivers’ Genders SELECTED IN THE SUPPORT GROUP

Caregivers’ Ages (years) 63% are 40 and below

Caregivers Families’ income Per month in Saudi Riyals

Caregivers’ Educational Level 92% have a minimum of university education, indicating this was an educated group.

The number of attendees in the icebreaking meeting

the attendance of caregivers by gender over time

Main findings 54.5% of the attendees felt that the support group was useful or very useful by giving it a ranking of 4-5/5. Only one person reported “keeping privacy” as a reason that prevented his attendance. 77.3% of the attendees recommended to set a topic for each support group meeting before hand. 55% mentioned that personal obstacles that are not related to the support groups’ dynamics stood in their way of attending. 63.6% agreed that the timing of the support group was not suitable. 50% mentioned that personal obstacles that are not related to the support groups’ dynamics stood in their way of attending. << Such as being busy or not having transportation or simply not being able to leave the patient alone… etc.

Obstacles leading to absence by gender The fact that many members (77.3%) thought that having a specialist attending the support group shows that the community still doesn’t fully comprehend the theory and goal behind the support groups. The support groups are meant to express feelings, experiences, and obstacles faced by the caregiver to ease their pain rather than having a lecture giving by a specialist. Transportation was an issue in a lot of members (41%) mostly the females, due to the fact that they are not allowed yet to drive in Saudi Arabia. While on the males side, we see some number of members suffered from this issue due to the fact that they are either under the allowed age of driving, or do not have enough financial income to own their personal vehicles. A significant number of members (50%) mentioned that being busy is a reason for not attended. We can also notice that a lot of females suffered from this issue much more than the males did. Female caregivers are under a huge amount of stress as they have a family to take care of and a patient to look after. On the contrary, the male caregiver might have more free time as once he is done from his daily work, he needs to only focus on the patient rather than having all the housework hassle the female caregiver has.

Analysis of results The high level of satisfaction confirms that absence is likely related to personal factors. Surprisingly, privacy or anonymity was not a factor associated with poor attendance. The request to assign a title for each sessions is indicative of the need for structure and order. For females, being more busy than males with activities other than patient caregiving may reflect the diverse responsibilities they within their families. Seeing that 50% ranked the support groups’ meetings 4/5 or higher indicates that the support groups were actually beneficial to the caregivers. << And this means that we should actually consider performing more support groups and taking into account the changes required for a better experience. Also that’s give us a hint that our support groups has nothing to do with the absence of the members..actually

Conclusions The concept of support groups in SA is in its early phase. Members of the group need to be prepared for the nature of group work and the associated commitment, especially females. Providing structured activity and nurturing freedom of choice will likely improve participation.

A final thought.. Each community is unique and differs from the others by its traditions and believes. Thus, to perform a successful project, these traditions and believes have to be taken under consideration and guide you via the obstacles that you might face on the way of your goal. The community itself is the lamp that will lighten up the road of success for any project you might pursue.

Thank you!