The role of caregivers is a central and integral part of the management of Alzheimer’s disease (AD) patients. Although care-giving may bring personal gains and satisfaction, caregivers most often provide these services to the society and their family members at substantial personal cost, including emotional and social burden. Research indicated that caregivers with low resilience may require more assistance managing. In this cross sectional study, strains levels and resilience levels of the AD caregivers were assessed and correlated with various patients and caregivers’ factors. 230 participants were recruited through Alzheimer’s Disease Foundation Malaysia (ADFM). The findings of this study revealed that adult-children of Alzheimer’s patients carried out the main care-giving role, and they experienced significant level of caregiver strain. Hence, the female caregivers scored higher in strain index compared to the male caregivers. In contrast, male caregivers reported a significantly higher level of resilience. Being a male caregiver has been reported to be positively related to higher caregiver resilience by Joling et al (2016). Research demonstrated that women caregivers mainly adopt emotion-focused strategies and this style is related to a higher level of distress, whereas, male caregivers mainly adopt task-oriented strategies, which is associated with lower distress (Iavarone, Ziello, Pastore, Fasanaro & Poderico, 2014). Moreover, the cultural expectation associated with family duties to believe care for elderly should be provided by women may impose extra burden on them (Meyer, 2017). This research showed that the number of years of care provided by caregivers is significantly associated with the strain score; as the number of care-giving years increases, the caregivers experience a higher level of stains. These risk factors can help identify those caregivers at highest risks of strain and serve as a platform to test interventions to help alleviate this strain. The significant negative correlation between resilience level and caregiver strain further highlighted the importance of interventions for increasing resilience in Alzheimer’s disease caregivers. For substantiation of the current findings, future studies addressing the appropriateness of interventions to improve the family caregivers’ resilience level, and supports for Alzheimer’s disease patients to empower them in performing their daily tasks that can reduce the imposed burden on caregivers are required.
This paper has been publish in Geriatric Nursing journal:
In conjunction with World’s Alzheimer’s Day, IMU Psychology Club organized a community project titled Days With Alzheimer’s Patients. This community project was successfully conducted on 25th and 26th of September 2018 at the Alzheimer’s Disease Foundation Malaysia (ADFM) followed by a sharing session held on the 29th of September 2018 at the Senate Room of International Medical University, Bukit Jalil.
In line with the event slogan ‘Alzheimer’s Matters’, event organizer Nur Afifah and co-organizer Muhd Ilyas conducted the Days With Alzheimer’s Patients community project with the sole aim to heighten awareness on the severity of Alzheimer’s disease in Malaysia. This project sought to provide first hand experience for volunteers in caring for Alzheimer’s patients and to increase awareness and exposure on the effects of Alzheimer’s in the lives of both patient and caregiver.
Days with Alzheimer’s Patients Community Project, ADFM.
In an attempt to provide volunteers maiden experience on Alzheimer’s patients and on methods on how to care for these patients, a two day visit was conducted to the Alzheimer’s Disease Foundation Malaysia (ADFM) Day Care Centre. The event underwent with great success, with a maximum participation of 10 volunteers and the assistance of Madam Pauline Khoo, the nurse manager of the ADFM center. On the first day, after reaching the daycare, a briefing session took place of which Madam Pauline assigned tasks to the volunteers where said tasks mainly involved participants to assist the nurses with their care of the patients as well as to observe how these nurses handled the caring of all these patients.
During the second day, the briefing of the tasks were conducted with the assignment of tasks. Afterwards, the volunteers had the opportunity to perform activities such as making sandwiches as well as creating some arts and crafts. At the end of the day, the volunteers were given certificates as a token of appreciation for their time and contribution. We hope that this hands-on session on the knowledge for Alzheimer’s patients’ care giving would become annual event to continue promote awareness of this neurodegenerative disease, and we hope to actively share new information accumulated from this experience through various platforms like the ADFM-IMU blog and our social media pages.
Get to Know Alzheimer’s Talk – Sharing Session at IMU
Around 60 participants attended the Get to Know Alzheimer’s talk held on the 29th of September. The sharing session was officiated by Dr Zahra Fazli Khalaf with a welcoming message and an introduction about the ADFM-IMU Blog, launched as a joint collaboration between IMU Cares and ADFM back in September 2017. This initiative is a blog run with the contributions from IMU students from different healthcare fields that share a common goal towards contributing to the increase of Alzheimer’s awareness within the community and provide support and encouragement to patients and caregivers. “This blog is also built to foster passion and insight among IMU students to reach out and gain first-hand experience in providing support for Alzheimer’s patients and in spreading awareness through blogging and volunteerism”, said Dr Zahra. The talk was conducted by Miss Satiapoorani, a senior trainer, Dr. Colin Chong, and Miss Moonglan, caregivers and volunteers for ADFM.
Alzheimer’s Disease (AD) is one of the most common type of neurocognitive disorders in which the degeneration of the cognitive, and eventually bodily, functions are not just devastating, but deadly as well. Despite the severity of this particular condition, most people, Malaysians included, simply assume it to be a part of the normal aging process. Alzheimer’s disease is an irreversible, progressively degenerative disease that affects multiple functions of the brain, resulting in impaired memory and cognitive function, thinking and personality change. It can be severe enough to impair performance of necessary daily activities and work.
Risk factor and signs
Miss Satiapoorani, senior trainer at ADFM, began her talk by addressing misconceptions about Alzheimer’s that are commonly upheld within the society. She explained that many elderlies with Alzheimer’s face age discrimination, whereby, they are disdained because of their inability to remember things and carry out simple cognitive tasks. “Alzheimer’s disease is a problem of the brain, not the person suffering from it. The patient is a captive to his or her own debilitated brain” said Miss Satiapoorani. Furthermore, she also discussed various signs and risk factors such as the correlation between the unhealthy lifestyle and diet practices in Malaysia as a risk factor towards developing Alzheimer’s. As the brain is supplied nutrients through the body’s blood vessels, one could say that the food taken in that affects the heart could in return affect the brain with the heart being responsible in pumping blood through these blood vessels to the brain. She also mentioned how the diseases related to both the heart and head also seem to have a heightened risk for an individual in developing Alzheimer’s disease. These diseases include hypertension, diabetes and high cholesterol as well as the unhealthy habit of smoking.
A caregiver sharing session was conducted by Dr Colin and Miss Moonglan, caregivers and volunteers at ADFM. Dr Colin Chong shared his story as a caregiver of his wife. He has been caring for his wife of 40 years, Joyce Liew since she was diagnosed with Alzheimer’s disease in 2014. “Alzheimer’s disease is an agony. My wife is physically present but I know that her mind is distant and fading away” added Dr Colin. This part of the talk also included real stories and cases of Alzheimer’s patients and the struggles they face in coping with daily tasks and simple responsibilities. Miss Moonglan shared the story of her husband who is also an Alzheimer’s patient. “Many times he has wandered off absentmindedly in public places, and I am truly grateful for the good samaritans who were patient and kind enough to help him contact his family and find his way back home safely” said Miss Moonglan. She emphasized on how important it is for members of society to practice empathy and patience when dealing with Alzheimer’s patients in distress or in need of assistance. “After all, they are most likely lost in thoughts of disarray, isolated from immediate present happenings” she added.
Finally, the 2-and-a-half-hour talk ended with a very engaging Q and A session. Participants asked many important questions and benefited greatly as the speakers addressed each one. It was evident that this event moved people to change their perspective and question many grey areas surrounding this topic.
Days with Alzheimer’s Patients was an event enriched with knowledge, curiosity and learning. People were touched by the struggles that Alzheimer’s patients endure throughout their battle and it most assuredly caused an impact among all who attended this meaningful event. It was indeed a privilege and an honour for IMU Psychology Club to work together with ADFM on such an impactful event as we aspire to further strengthen our relationship in the hopes of raising awareness within the society about Alzheimer’s disease.
Juanita Magen & Sharwin M Yugaseelan
Public Relation Representatives, IMU Psychology Club
A group of Medical Biotechnology, Pharmaceutical Chemistry and Pharmacy students from IMU were involved in an initiative with ADFM with the main objective of providing support and encouragement to people living with Alzheimer’s Disease by sharing the joy of carrying out basic activities and meaningful fun and games. They also sought to help the individuals develop new skills and enhance existing ones, so that they might undertake new hobbies or rediscover old memories of activities done in the past.
The role ADFM plays is quite significant with efforts ranging from practical and emotional support of the patients and their families, caregiving services like day care centre, repository and nursing services as well as media exposure to promote community knowledge as well as talks, workshops and exhibitions. The students gave their focus on the day care centre housing more than 40 individuals, who are cared by trained therapists and nurses every day.
Their first visit on 1 March 2018 saw a presence of about 30 patients and 10 staff. The day starting off with some light aerobics designed to improve muscular coordination, followed by mind games like Bingo and memory card games, which helped the team gauge the abilities of each of the patients. The pace was then switched to more physical activities such as singing and light dancing. The station games after lunch was the highlight of the day, consisting of a variety of activities such as planting, light cooking, arts and crafts and mini-petting zoo, of which had particularly great reception. The activities presented to the patients were researched in advance to ensure that they were suitable in relation to Alzheimer’s Disease and age.
The project leader reports that he, at the end, learnt to work together with his team, built bonds between people of different programmes, and gained insight on the trials and tribulations undergone by Alzheimer’s patients. In particular, he notes a realization that we could be at any end of the spectrum when we reach an elderly age, and thusly should not take for granted opportunities given in the present as this disease can affect family members, friends, and possibly ourselves.
Statistics showed that 18 million people worldwide is diagnosed with Alzheimer’s Disease and the number is expected to rise to 34 million by 2020. Alzheimer’s Disease not only affects the patients, but also profoundly changes the lives of their family members. Caring for a loved one with Alzheimer’s Disease is sometimes referred to as a “36-hour-a-day” task as it can be stressful and overwhelming. Studies shown approximately 60% of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high. As many as 40% of them suffer from depression. In this article, we interviewed Professor Ong Kok Hai, the Director of External Affairs of IMU, to share his personal experience of taking care of a mother with Alzheimer’s.
Prof. Ong shared that his mother was great and loving, much like any other mothers. She passed away peacefully few years ago, at the age of 98. He first noticed that there was a slow change of behavior in his mother and decided to bring her to see a doctor in University of Malaya for a check-up, only to have her diagnosed with Alzheimer’s Disease. Prof Ong said that her mother was staying with his sister, and they would sometimes take turns to look after her. He also hired a maid to take care her mum after she is diagnosed with Alzheimer’s Disease.
The initial symptom, which is mandatory for this disease, is being forgetful. Moving on, she tends to hide cutleries in her room, or walk around the house in the midnight or at dawn. As the disease develops, the symptoms aggravate. She started defecating all over the places, resist showering, pinching the caregiver and drinking soap water. As the disease progress to its later stage, his mother gradually lost the ability to talk sense and forgets her family members.
“The biggest lesson I learned from this experience is, to treat them gently and with love”, added Prof Ong, with a misty-eye and a brittle voice. He further mentioned that he only realized how little awareness was done about this disease in Malaysia, after the loss of his mother. He hopes that more initiatives can be taken to create a simple platform to raise awareness of Alzheimer’s Disease. In this regard, ADFM is doing a great job but its efforts need to be further expanded to other location in Malaysia. “We can start small: by targeting certain areas, or even our neighborhood”, said Prof Ong. He also specified it is important that caregivers need to be taught certain skills on how to handle Alzheimer’s patients with an optimistic attitude and with love, not forgetting to take a break occasionally. “Although there is nothing we can do to cure this disease at present, but we can try our best make them feel more comfortable”.
Photo taken after the interview. Left to right: Annabel, Prof. Ong and Kerk.
New research shows that participating in certain group activities can significantly improve overall mood, engagement and participation in dementia patients. Common nursing home activities were used in this study in which most, if not all, are easily replicated to be conducted. It is important to note that findings from this study indicate varying levels of success for different activities, and that results may be affected by the individual’s own cognitive abilities.
Listed below are some group activities you may introduce to your dementia patient and in contrast, some group activities to most definitely stay away from!
1. Games, choral groups, holiday discussions – such activities result in significantly greater levels of engagement, active participation, positive attitude and positive mood.
2. Exercise groups – this activity has shown to specifically increase active participation.
3. Brain games – both mentally stimulating and fun, brain games have been found to improve the overall mood of the patient.
4. Baking – this activity may be a little tricky to conduct in large groups or if there is no kitchen available, but if given the opportunity, do try out baking as it is known to increase active participation and a positive mood.
Stay away from activities such as poetry and storytelling as research shows a drop in attitude, positive mood and active participation.
In general, group activities seem to have a positive effect on participation, engagement and mood of dementia patients. With these improvements, the quality of life of these individuals will get better, ultimately preventing behavioural problems from a non pharmacological perspective.
Several studies have emerged over the past year noting the sinister effects of alcohol on cognitive function. In the previous article, research from a French study revealed alcohol abuse as a prominent contributor towards dementia, with heavy emphasis on early onset Alzheimer’s specifically. But why does this happen?
A study conducted on 360 patients from New York, Boston, Baltimore and Paris discovered that the type and amount of alcohol consumed played an integral role in impacting the rate of cognitive decline. The study found that heavy drinkers, those who consumed more than eight alcoholic beverages per week were at a greater risk of a speedier decline in cognitive function as compared to moderate drinkers who consumed one to seven alcoholic beverages per week. Results of this study also indicated that increased consumption of hard liquor presented a more prominent decline, however this was not the case with beer and wine.
In summary, heavy alcohol consumption accelerates the rate of cognitive decline in Alzheimer’s patients, indicating a strong likelihood that it precipitates the progression of the disease, thus leading to early onset Alzheimer’s.
A new study conducted in France analyzed the nationwide data for admitted patients in hospitals between 2008 and 2013 found that alcohol use disorders were significantly associated with dementia.
The study supports that alcohol use disorder be recognized as a major risk factor for all types of dementia, especially for early-onset dementia. The analysis also showed that the risks are remain unchanged even after abstinence from drinking, citing that lifelong damage had already been inflicted on the brain.
In their closing, the researchers recommended that the risk of alcohol use disorder should be recognized, and that appropriate action such as early detection and intervention should be taken to reduce heavy drinking, and delay or prevent the onset of dementia.
The physical health advantages of frequent exercise are seemingly endless: weight loss, decreased the risk of heart disease and diabetes, lower blood pressure, and a decreased risk of depression, to name a few. Less understood is the connection between physical exercise and brain health. A recent study published in the Journal of Cognitive Neuroscience by researchers at McMaster University have identified an exciting connection between body and mind, specifically as memory is concerned. The study suggests that interval training can help improve memory and decrease the risk of falling victim to the devastating neurological effects of diseases like dementia and Alzheimer’s as you age.