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diagnosed with alzheimer's disease: managing symptoms, treatment and support
7 minute read
those whose loved ones have been diagnosed with young-onset dementia may face the additional challenge of balancing caregiving responsibilities with work, potentially leading to a loss of income.
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in canada, approximately 771,969 canadians are living with alzheimer’s disease or another form of dementia, a number projected to reach nearly one million by 2030.
ontario leads in diagnoses, with an estimated 316,600 people affected across the province. quebec follows closely with 170,000 cases, while british columbia reports 85,000 diagnoses. the latest available data reveals that prince edward island has the lowest number of cases, with 2,800 people affected.
this life-long, neurodegenerative and progressive disease chips away at brain cells, damaging cognitive abilities and memory over time. although alzheimer’s typically affects older adults, 28,000 canadians are living with young-onset dementia, which affects people younger than age 65.
in simple terms, dementia is the catch-all umbrella term for diseases that affect memory, cognitive abilities and daily functioning. alzheimer’s disease stands out as the most prevalent form of dementia, representing roughly 60 to 80 per cent of all diagnoses.
here’s how you can manage your alzheimer’s disease diagnosis.
know the signs, symptoms and stages of alzheimer’s disease
the signs and symptoms can vary across disease stages.
someone with mild alzheimer’s may have difficulty with learning new information, including recent events, places and names. they may also struggle to find the right words, or they may lose or misplace objects. while people at this stage can still recognize family and friends and travel to familiar places, they may have difficulty solving problems and performing routine tasks.
in the moderate stage of alzheimer’s, spanning over many years, symptoms intensify and include increased memory loss, confusion, difficulty recognizing friends and family, as well as noticeable mood or personality changes. sleep disturbances, suspicions about other people, wandering outside, and urinary or bowel incontinence are also common.
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in the severe stage of the disease, individuals become unaware of their surroundings, face almost complete memory loss, lose their ability to communicate and become more susceptible to infections.
dr. roger wong, alzheimer society of canada board member and clinical professor of geriatric medicine at the university of british columbia, suggests that the cause of dementia, while still unknown, has historically shown a higher prevalence in women, both in canada and globally.
multiple studies in taiwan, sweden and elsewhere in europe confirmed that women are more likely to be diagnosed with alzheimer’s than men. there is also evidence that suggests that women have stronger immune systems and that, as a result of this evolutionary difference, they may have more amyloid plaques than men. while it has been argued that more women are affected by alzheimer’s because of their longer life spans, “more research is needed to explore the potential biological and non-biological reasons behind this disparity,” wong emphasized.
currently, there is no single blood test or imaging technique used to diagnose dementia or alzheimer’s. instead, a patient evaluation involves a comprehensive approach, including inquiring about their medical history, performing a physical examination and cognitive function testing, and sometimes, a ct scan of the brain may be required to assess any structural changes. this is to ensure that nothing else could be causing the symptoms an individual may be experiencing, such as a rare type of brain tumour.
blood, urine, and other medical tests, such as psychiatric evaluations and collection of cerebrospinal fluid, may also be conducted to help rule out other possible causes of the symptoms when diagnosing alzheimer’s disease.
understand your alzheimer’s diagnosis
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receiving the diagnosis of dementia or alzheimer’s can evoke a range of reactions. as wong highlights, each situation is unique. some of the common reactions he has observed in clinical practice include instances where the affected person may not fully grasp the severity of the problem, even if the family acknowledges it.
on the other hand, individuals who may have been anxious prior to the diagnosis may feel a sense of relief, while other family members may face challenges in accepting the diagnosis, creating a complex emotional landscape within each family unit.
“there are negative values, attitudes and beliefs attached to dementia,” wong said—a stigma that he says is often heightened in underrepresented communities. within certain cultures, the inclination to keep matters private or within the family can contribute to the burden of care becoming overwhelming.
wong warns that relying solely on internal support could lead to increased stress and pressure for caregivers who bear the responsibility alone. he underscores the importance of challenging this stigma, highlighting that just like lung or heart disease, dementia is a condition that deserves acknowledgement and support.
know your treatment and prevention options for alzheimer’s disease
according to wong, treatment for alzheimer’s includes pharmacological interventions aimed at slowing down cognitive decline and preserving quality of life. non-pharmacological strategies involve prioritizing safety to mitigate the risk of wandering using tracking technology or apps to monitor the person’s movements.
additionally, ensuring safety in daily activities, such as meal preparation, is equally important, and timers are a valuable tool. exercise is recognized as a non-pharmacological treatment that’s beneficial for the body and the brain, and its effectiveness is enhanced when combined with socialization.
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wong says that programs like minds in motion cater to individuals in the early and mid-stage of the disease as well as their care partners and provide language-specific and culturally sensitive activities that are available both in-person and virtually.
similarly, first link, a toll-free telephone service, can be helpful in connecting individuals and their care partners with resources and support services at every stage of the disease.
“dementia is not a normal part of aging,” wong said. “therefore, prevention is important to all of us.”
highlighting four key lifestyle measures for the prevention of dementia, wong advocates for addressing risk factors for stroke, such as managing high blood pressure, type 2 diabetes, high cholesterol and any heart irregularities.
regular exercise, incorporating the recommended 150 minutes a week or 30 minutes every day of both aerobic and anaerobic activities, can also contribute to overall brain health. one study found that even light exercise, such as a short walk around the block, running errands or doing housework, can all help reduce the risk of dementia.
wong also underscores that socialization plays a key role in physical and mental well-being and that maintaining hearing health is also essential, as hearing loss has been associated with dementia. a study that followed 639 individuals over a 12-year period found that hearing loss doubled dementia risk.
over the past three decades, wong says that significant strides have been made in dementia research. these include the recognition that dementia is not an inevitable aspect of aging but a preventable condition.
key breakthroughs in disease management include the development of drug classes that effectively slow down cognitive decline, have fewer side effects and are better tolerated by a larger population. furthermore, the ongoing studies into tau proteins could hold potential for promising new developments.
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treatments geared toward specific symptoms, such as the recently approved brexipiprazole for agitation, may also be used to tackle various symptoms that arise due to alzheimer’s disease.
other non-medicinal therapies, including music, animal, and cognitive stimulation therapy, are also approved in canada as complementary approaches to treating alzheimer’s that can help reduce symptoms and improve quality of life.
additionally, there is a heightened understanding of the vital role in supporting both patients and caregivers, recognizing care partners as the “unsung heroes in the field of dementia care,” wong said.
natasha jacobs, advisory group and referral service manager at the alzheimer society of canada, explains that as the disease progresses gradually, symptoms may intertwine, making it more challenging to pinpoint transitions. in navigating this evolution, jacobs advocates for a person-centred approach, championing the belief that individuals affected by the disease deserve to be treated with dignity and respect.
“a key point to remember is although a person loses many abilities as dementia progresses, it is important to focus on the abilities that remain,” jacobs said.
in the early stage of the disease, jacobs underscores the importance of preserving independence, as individuals can still actively contribute to their own care plans. as the middle stage ushers in a more noticeable decline, support with daily tasks becomes crucial.
strategies to minimize risks, such as wandering, become pivotal and may help sustain a meaningful quality of life. in the late stage of the disease, where verbal communication and self-care abilities significantly diminish, jacobs says that individuals require around-the-clock care. the end-of-life phase, on the other hand, prioritizes comfort, addressing both physical and emotional needs to improve the overall quality of life.
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establish your alzheimer’s care team
jacobs explains that due to the life-long and progressive nature of alzheimer’s, care partners assume a crucial role in assisting their loved ones through every stage of the disease. but they, too, face many challenges.
according to jacobs, caregivers experiencing stress may deny their loved one’s diagnosis and express anger towards them and others. they may become emotionally more sensitive, withdraw socially, and they may experience anxiety and depression. sleep disturbances, difficulty concentrating, burnout, and health problems can also affect caregivers.
those whose loved ones have been diagnosed with young-onset dementia may face the additional challenge of balancing caregiving responsibilities with work, potentially leading to a loss of income. jacobs advises caregivers to get individual support either through a professional or as part of a support group, like those offered by alzheimer society of canada.
“asking for help is not a sign of inadequate caregiving,” jacobs said. “caring for someone living with dementia is an impossible task without support.”
receiving the diagnosis can be emotionally challenging for the individual and their loved one. the concerns about observed changes and uncertainties about the future can be overwhelming, but according to jacobs, having a formal diagnosis could help open doors to necessary support and services. but not everyone has access to a primary care provider or receives a formal diagnosis.
“whether you have a formal diagnosis or not, you can connect with your local alzheimer society for support,” jacobs urges. “the alzheimer society can connect you to community and healthcare supports that help you live as well and as independently as possible, while also planning for the future when more robust healthcare system navigation may be required.”
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