Seniors living with dementia can often feel isolated. Over time, the ability of a person with dementia to communicate becomes worse and interactions that once seemed so easy may be more difficult. This can be frustrating for everyone involved. Humans are very social creatures. We need healthy interactions with others to maintain our health. This does not exclude persons living with dementia. Loneliness will cause changes to the brain and psychosis also causes changes to behaviour. Therefore, the intervention of caregivers is paramount to the sustainability of persons with dementia.
Depression, hallucinations, delusions, aggression, agitation, wandering and sundowning are some hallmark behaviours and psychotic symptoms of dementia. Persons suffering from dementia can have sleep disorders, rapid eye movement sleep behaviour disorder, rigid muscles and bones, and many other hidden symptoms. If there is no intervention by their caregivers on their psychotic symptoms, especially depression and delusion, it can cause trauma. People with dementia can also have suicidal thoughts that may affect their well-being.
CARING FOR PERSONS WITH DEMENTIA
By having appropriate training and information, caregivers can provide successful intervention to persons with dementia at the earliest opportunity. Establishing a trusting, interpersonal relationship is the key to sustain persons with dementia. Do not reason, argue or challenge the person with dementia. Caregivers must give assurance that the person with dementia is safe and no harm will come to him, otherwise it will create mistrust. Evidence suggests that bad, psychotic episodes can occur in moderate to late-stage dementia, which are always triggered by stress. Confusion and the inability to remember certain people or objects can be stressful for persons with dementia. If the caregiver is not equipped with the right skills and knowledge to handle the situation, it can become frustrating and stressful for both caregiver and person with dementia.
The hardest part about this disease is that we cannot ask persons with dementia to change their behaviour. As caregivers, we are the ones who will have to change our behaviour to care for our loved ones who are suffering from dementia. We do not need to correct persons with dementia when they say or do something wrong. Just listen and agree, but if what they are saying will cause embarrassment, we can divert the situation. It is of utmost importance that we do this. Correcting the person with dementia may cause more stress and also sour the relationship.
Next, do not argue with your loved one who has dementia. If you argue, it will create tension, suspicion and maybe aggression towards the caregiver. What the caregiver can do is acknowledge what the person with dementia has said, respond in a short, calm way, and then redirect him to something else. In addition, do not reason with him. When the caregiver attempts to reason with the person with dementia, it can lead to extreme frustration on the caregiver’s part and make it more likely for the person with dementia to act out. Persons with dementia are not able to reason the way we normally do as their brains are impaired. The goal is to try to come up with a response that calms and reassures them. Caregivers must come up with sentences that make sense to the person with dementia, which may not be so to the caregiver.
Lastly, a person with dementia should not be challenged with questions such as, “What day is it today?” or “What did you eat for lunch yesterday?” and so on. These may seem like easy questions for us, but for them, the questions can be embarrassing. They may then get defensive, causing them to disengage. Always remember to interact in a calm and assuring manner so that the person with dementia wants to be engaged.
BENEFITS OF A LOW-STRESS ENVIRONMENT
Why am I advocating for a good and low-stress relationship between persons with dementia and their caregivers? The caregiver’s health is essential to a person with dementia especially in this trying time of COVID-19. If the caregiver has good knowledge and skills in caring for his person with dementia, the latter will give in to him. When the caregiver is less stressed, it shows in his facial and body expressions. In turn, the person with dementia will benefit from a less stressful environment.
Staying healthy during the pandemic is important for those with dementia. People with dementia have trouble forming new memories and learning new information. As such, having routines and repetitions are critical for them to sustain and function. A good routine includes consistent sleep and wake up times, good hygiene, meal times, and key activities. Unfortunately, the pandemic has disrupted much of this. Disrupting routines for these individuals creates a lot of stress for those who are unable to track information. This may lead to an increase in confusion and memory issues.
Do not expose people with dementia to many negative thoughts from the environment such as watching too much television during this period. While they might not remember the details, they hold on to the emotional information. As a result, they may feel increased fear, anxiety and stress, but do not understand why they feel so.
Instead, encourage them with positive thoughts. People with dementia will only trust their caregivers. If the caregivers are not equipped with the necessary skills and knowledge, it will create an unstable relationship during the pandemic and can lead to more stress, anxiety and fear for those with dementia.
Allow those with dementia to engage in activities, and turn them into routines. If they love to sing and listen to music, let them do so. Music is a tool for a person with dementia to improve his brain impairment. Create routines for the person with dementia, with good affirmative meditation especially when he wakes up and when he goes to bed. Meditation, prayers and supplication are vital for the subconscious mind of a person with dementia to accept positivity and shift his paradigm to have less stress and be calmer.
BUILDING A DEMENTIA-INCLUSIVE SOCIETY
In Singapore, a few constituencies have been declared Dementia-Friendly Communities. However, if these constituencies do not involve those with dementia, then they will not achieve the objective. There is much work to be done. This includes educating the members of the constituency on what constitutes a dementia-friendly community. Every stakeholder in the constituency must be educated on dementia: from the businesses to the infrastructure of the community.
There needs to be an audit of the infrastructure to make sure it is safe for persons with dementia. We also need to educate members of the constituency to have compassion towards those with dementia. The police would also need to undergo training to recognise persons with dementia. There should be greater awareness of dementia in schools too. The efforts should involve all of the people in the constituency.
I am an advisor to the Kebun Bahru Dementia-Friendly Community. I am an advocate for dementia and volunteer for the Alzheimer’s Disease Association (ADA). But I find that there is still a long way to go in terms of building a community that is dementia-friendly because of the reluctance of some of the community members. The outreach to the Malay community can also be improved. Many in the Malay community with dementia suffer in silence. It seems the stigma of dementia within the community is very strong. The Malay community has only one day care centre for persons with dementia run by Club HEAL in Bukit Batok, which was officially opened in July this year. While the ADA has many day care centres, they do not see many Malay clients. I have since set up a Community Volunteer Leaders Malay Team, which aims to do outreach and provide support in the training of caregivers.
The society in Singapore still has a long way to go in caring for persons with dementia as compared to other countries like Australia, Indonesia, New Zealand and Europe. However, I believe that someday, we will achieve our objective of having a dementia-inclusive society for Singapore. ⬛
Mohamad Rosli Abu Bakar is an advocate and volunteer for the Alzheimer’s Disease Association of Singapore. He founded The Chapel Malay Dementia Community, which currently has seven community volunteer leaders in his team. He suffers from young-onset dementia with lewy body and Parkinson’s disease, and has been unemployed past four years due to his conditions. Hence, he devotes his time to dementia advocacy especially to the Malay/Muslim community.