What might I expect? Alzheimer’s shackles person’s ability to function

This article is not medical advice. If you have concerns, please consult your physician or health-care provider.

Floods, fires, drought — the disasters related to climate change are causing trauma across the country. An urgent personal problem is causing havoc with the minds of Canadians and people around the world. Developing neurodegenerative disorders is not a normal part of aging, however the number of dementia patients is rapidly increasing. The disease is much more than a bad memory.

“Dementia is a term for several diseases that affect memory, thinking and the ability to perform daily activities,” the World Health Organization (WHO) stated. “As brain cells are increasingly damaged, judgment and the ability to reason are affected, along with behavioural changes, mood and communication difficulties.

“The illness gets worse over time. It mainly affects older people, but not all people get it as they age.”

According to 2020 statistics noted by Alzheimer Society of Canada (ASC), more than 597,000 people in Canada live with varying forms of dementia. Of those, nearly 62 per cent are women. In 2020 alone, 124,000 people were diagnosed with life-altering neurodegenerative diseases. The ASC estimates that by 2030, the number will shoot to over 955,000 Canadians living with dementia. Health-care systems will be submerged in the tsunami of patients. Worldwide, 55 million people have the disease.

Alzheimer’s is the most common form of the disease. Vascular dementia is second most common, occurring when blood flow is blocked or damaged. Interruption of oxygen to brain cells results in cell death. There are several more types of dementia.

Lewy body dementia exhibits similar symptoms to Parkinson’s disease. Lewy bodies — alpha-synuclein proteins — deposit inside brain nerve cells. “Frontotemporal dementia is an umbrella term for a group of rare disorders that primarily affect the areas of the brain associated with personality and behaviour,” the ASC said. Mixed dementia is a diagnosis of more than one type of the disease. Other rare types are under investigation.

Even more alarming is early onset dementia, occurring in people under 65 years of age. Developing in their 40s and 50s (and possibly much younger), “right now, at least 28,000 Canadians under age 65 are living with young onset dementia.” They comprise about two to eight per cent of dementia cases.

Subtle signs of dementia may appear 10 years before diagnosis, and the disease affects about one in four people over age 85. “On average, patients with Alzheimer’s disease live for eight to 10 years after they are diagnosed,” according to Stanford Medicine. Depending on age, “some people live as long as 20 years.”

Regarded as primary markers of the disease, two brain changes occur in Alzheimer’s: amyloid plaques and neurofibrillary tangles.

Amyloid plaques develop in the tissue between nerve cells and “are unusual clumps of protein called beta amyloid along with degenerating bits of neurons and other cells.” Also related to the decline of cognitive abilities, “neurofibrillary tangles are bundles of twisted filaments found within neurons,” composed mainly of the tau protein. Tau in healthy neurons “helps the functioning of microtubules, which are part of the cell’s structural support and deliver substances throughout the nerve cell.” Alzheimer’s disease causes tau “to twist into pairs of helical filaments,” blocking the microtubule transmissions.

There is no specific test to diagnose dementia. Online tests may be fun but are not useful. A visit to a medical professional is required. The doctor will begin with a full medical history and tests to rule out other possible issues affecting brain function, such as side effects of medication, tumour, stroke, infection or other health concerns. The patient and a family member or friend will be asked about symptoms, daily activities and any behavioural or personality changes.

The physician may perform tests “of memory, problem-solving, attention, counting and language,” the National Institute on Aging said in “How is Alzheimer’s Disease Diagnosed.” Blood and urine tests may be completed. Brain scans may be performed, such as CT, MRI or PET. More intensively, a spinal tap may be ordered to collect cerebrospinal fluid to “measure levels of proteins associated with Alzheimer’s and related dementias.”

If Alzheimer’s or another dementia is diagnosed, the physician will refer the patient to a neurologist, geriatrician or other specialist for ongoing care. Dementia is more than just forgetting — it shackles the person’s ability to function. The family will be offered guidance as well.

Healthy living may delay symptoms. Treating diabetes and high blood pressure, giving up smoking and drinking too much, and maintaining a healthy weight help, as do physical activity, staying socially active and seeking treatment for depression.

“Because of the effects of dementia, a person’s ability to communicate may become impaired, making it difficult to talk with them,” ASC noted. It is important to keep up communication with the person, treating them with respect and dignity. Dementia affects each person differently.

Progressing through symptoms, patients “may not be able to recognize family members or friends, develop difficulties moving around, (and) lose control over their bladder and bowels,” WHO said. They may “have trouble eating and drinking and experience behaviour changes such as aggression that are distressing to the person with dementia as well as those around them.”

Offering reassurance and kindness is important for dementia patients as they undergo frightening changes. A daily routine is useful, beginning with bathing and dressing at a regular time, to meals at consistent times. Reliable schedules provide security. “Let the person do as much as possible,” Alzheimer.gov said, and “tell the person what you are going to do, step-by-step while you help them bathe or get dressed.”

Assist the patient with writing down appointments and to-do lists, Alzheimer.gov noted, and put events in a calendar. Loose-fitting clothing with easy closures makes dressing easier; prevent falls by using non-skid footwear, marking the edges of steps with visible, coloured tape and ensure good lighting throughout the living space.

If a dementia patient cannot remember things, avoid saying “don’t you remember?” Have beloved personal items and photographs nearby. Involve the person in activities they are able to do and enjoy, such as household chores, gardening, exercising to music or going for walks.

Taking care of a dementia patient is fulfilling but also exhausting. Caregivers must take care of themselves. Support groups, taking regular breaks and asking for help may ease the burden.

There is no cure for dementia and no drug approved yet in Canada to slow progression of the disease. Research is ongoing into dementia to determine the cause, develop prevention strategies and improve treatment. As of 2022, Public Health Agency of Canada lists four approved medications to temporarily improve symptoms of dementia: Aricept, generically known as donzepril; Exelon, with the generic name rivastigmine; Reminyl, with the generic name galantamine; and Ebixa, known generically as memantine. Mood and behaviour treatment may be available from the patient’s health-care professional.

Shining a spotlight on awareness of dementia, September is World Alzheimer’s Month, with goals of fighting stigmatism and pressing for governmental policy changes. Visit the Alzheimer Society of Canada for significant information regarding dementia for the patient, their family and caregivers.

Susanna McLeod is a writer living in Kingston.

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