Patience and love are required
One woman's journey caring for a mother with Alzheimer's disease

TERRIFYING screams of "Help!" echoed throughout a community in St Thomas, late Monday night.

Frightened by the calls, members of the community went to investigate. Upon arrival to the house where thecalls came from the people were informed that this was an elderly woman stuck in mental limbo. In her mind it was 1970, the year fire razed her house, almost killing her and her children.

This was the latest episode in her suffering from Alzheimer's disease. Embarrassment painted the face of her daughter as she held back tears, explaining, "She is ill. She thinks we are trying to keep her in a burning building," the woman, who requested anonymity, said.

The distraught woman added: "Last week she seh wi a try kill her and dem must call the ambulance. My mother was on top of her voice late at night shouting this. I had to let my neighbours know that she is suffering from dementia, just to not cause more alarm."

Similar stories are experienced worldwide by caregivers of individuals with dementia-related diseases, and the effects they have on those suffering weigh heavily on these persons who care for them as they too come to grips with shifting realities.

This World Alzheimer's Month the Jamaica Observer brings to the fore the issues caregivers, who are often overlooked, face. Come September 21, World Alzheimer's Day will be observed under the theme 'Never too early, never too late', with the aim being to identify risk factors and risk-reduction measures to prevent the onset of dementia.

Alzheimer's disease is defined by Johns Hopkin's Medicine as a progressive, neurodegenerative disease that occurs when nerves in the brain die. It destroys brain cells and nerves, disrupting the transmitters which carry messages in the brain, particularly those responsible for storing memories. According to Alzheimer's Disease International, it is the most common cause of dementia and accounts for 50-75 per cent of all cases.

The family caregivers play a critical role in the day-to-day care and protection of patients, even to their own detriment. How do they fare when dementia disrupts the flow of their and their loved ones' lives? Do they have enough support?

Alzheimer's Jamaica founder Dundeen Ferguson related her experience with Your Health Your Wealth.

"It was by virtue of my mother's diagnosis that Alzheimer's Jamaica was created," she stated.

"Caring for someone with Alzheimer's, in some respects there are challenges with money but otherwise she was really quiet and, you know, we would occasionally give her activities."

Studies have shown that apart from memory loss, other symptoms of Alzheimer's disease include difficulty performing familiar tasks; disorientation regarding time and place; poor or decreased judgement; changes in mood or behaviours, among others.

Fortunately for Ferguson her mother's behaviours were mild, but she was quick to point out that there are cases of "aggressive patients" who may cause harm to themselves and others. She encouraged other caregivers to expect a lot of unusual as well as unpredictable behaviours from loved ones, due to the illness.

"We just have to be careful and watch them so they don't harm themselves. My mom did things like pouring liquid detergent into a cup to drink because it looked like a juice, so we had to be vigilant in our care.

"It can be a toll sometimes, but patience and love are required. We have to understand that what they are doing is because of the disease."

Against that backdrop Ferguson said more needs to be done locally to spread awareness of the disease as well as provide support for patients and family, especially from a governmental level.

She added: "My mother was in Canada, where she was diagnosed. She lived there so she had the health-care system take care [and provide support to us]. So at the point where we could no longer manage at home, because everybody works and had to be out, we found a caregiver to sit with her during the days, and then later we had to put her in a nursing home."

In 2006, spurred by the first-hand experience she had with her mother, Ferguson founded Alzheimer's Jamaica to provide support to local patients and their caregivers as they navigate the challenges of Alzheimer's.

"It is a charitable organisation with the mission to provide support services for persons living with disease and dementia, dementia-related disorders. Families and caregivers are included in that group as well," she told Your Health Your Wealth.

Located in Kingston, Alzheimer's Jamaica became a member of Alzheimer's Disease International (ADI) — a not-for-profit international federation of Alzheimer's and dementia associations from around the world — since 2009. The local organisation hosted ADI's Caribbean Regional Conference in Kingston in 2019.

It also runs a Friends of Dementia Club, with some of the services provided by the association including educational events, resources (fact sheets, reading materials), seminars/webinars/workshops, and support groups.

Apart from support for the patient with the disease, "support groups and counselling services are available for family caregivers where they are advised of what to expect and how to handle the challenges presented with that they are better informed and know how to handle situations as they arise", Ferguson further emphasised.

She highlighted that many times caregivers are overwhelmed and need information with which to arm themselves so as to create a balance between caring for their loved ones as well as maintaining a healthy life. It can be taxing at times because caregivers sometimes have to forego their social activities, take leave from their jobs, in addition to the financial burden that comes with treatment/care for patients. The increasing stress of caregiving may adversely affect the physical and mental health of the caregivers.

"Your own personal mental health becomes important for you to take care of your loved ones as well... There were one or two times a month [when] a family member of mine went into a bit of depression — and that can happen — and we just knew how to deal with it.

"We meet regularly with caregivers to offer support and for them to share their experience and receive help. We also offer resources on external care such as nursing homes, etc."

She shared that help and resources are also available at The National Council of Senior Citizens. Moreover, the ADI collaborated with the World Health Organization (WHO) to produce the Help for Caregivers booklet, which ADI and the WHO distribute to better equip caregivers.

"We want to raise awareness of the disease and what our support services would include, so that's pretty much what we do — go to communities to raise awareness as it relates to Alzheimer's disease so that they are better informed on how [they] can handle their loved ones..."

She shared that often emphasis is placed on persons living with the disease but family members caring for patients also need support, and their well-being is just as important.

While everyone does not have the same experience, Dundeen explained that caregivers must be mindful of the disease's influence on their loved one's behaviour as they can sometimes be affected mildly while at other times the result can be aggressive behaviour.

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