When Clare’s mother began asking repeatedly what was for lunch, Clare’s initial concern seemed trivial. However, as her mother’s short-term memory increasingly faltered in various situations, the family faced a heartbreaking diagnosis: Alzheimer’s disease, a common form of dementia. At just 56, Clare’s mother entered a challenging new chapter of life.
In our minds, Alzheimer’s and dementia are often linked to the elderly, those over 60. If a middle-aged person forgets something, we usually attribute it to stress, fatigue, or overwhelming responsibilities. Yet, dementia doesn’t discriminate strictly by age. Statistics show that it affects 20 percent of people over 65, but symptoms can start as early as 40.
The term “dementia” derives from Latin: “de” meaning “destruction” and “mentia” meaning “mind.” It signifies the deterioration of cognitive functions such as perception, speech, object recognition, planning, thinking, reasoning, memory, and the ability to form cause-and-effect relationships. These functions depend on various brain regions, which may degrade over time due to diseases or injuries.
In Alzheimer’s disease, amyloid plaques and tau protein tangles form in the brain, damaging nerve cells. This leads to memory degradation, diminished cognitive abilities, spatial orientation issues, and behavioural changes, eventually resulting in dementia. People with dementia often lose their ability to maintain their previous lifestyle and perform once-simple tasks.
Understanding Dementia’s Causes and Severity
“Dementia has many causes,” explains a neurologist. It arises from cardiovascular issues, autoimmune diseases, genetic predisposition, metabolic disorders, and strokes. Risk factors we can influence include uncontrolled hypertension, poorly managed diabetes, obesity, smoking, excessive alcohol consumption in middle age, low physical activity, social isolation, depression, inadequate education, hearing impairments, head injuries, and poor environmental conditions.
Specialists classify dementia into three severity levels: mild, moderate, and severe.
Mild Dementia
At this stage, cognitive impairments are minimal. A person may forget recent events, misplace items, or exhibit unmotivated changes in habits, behaviour, and character. Another sign is unexplained fluctuations in chronic illnesses, linked to forgotten medications.
“Mild dementia means a person can still go shopping, dress appropriately, and even cook,” shares a gerontopsychiatrist and founder of a dementia support foundation. “However, if scammers call and urge them to take out a loan, they might not seek advice because their cognitive abilities can’t process the situation. They might struggle to understand whether a contract is beneficial or harmful. If told to gather numerous documents to claim disability benefits, they can’t retain or plan such tasks.”
Though people with mild dementia can manage household chores, having a coordinator or helper is beneficial. It’s important not to take over all tasks to avoid accelerating cognitive decline.
Moderate Dementia
Here, difficulties with acquiring new knowledge and losing previously mastered skills, such as reading and writing, become evident. Individuals struggle with spatial orientation and everyday tasks like personal hygiene and cooking.
“Someone with moderate dementia can make a sandwich but not a soup,” explains a witness. “They understand how to put on trousers and a shirt but can’t choose weather-appropriate clothing. They might forget to eat on time and can’t plan their day, potentially leaving the gas on or putting a plastic kettle on the stove.”
This stage necessitates a helper, whether a caregiver or a relative, as the person can’t manage daily tasks alone.
Severe Dementia
In severe dementia, individuals lose social and communication skills and can’t care for themselves. They require constant care, either at home or in a specialised facility.
Sometimes, professional care in nursing homes may be the best option, especially when families struggle with caregiving, explains Kirill Proshchaev. “Entrusting care to professionals isn’t ‘abandoning’ a loved one but a sensible choice for ensuring proper care and potential rehabilitation. Families can still maintain contact and visit or bring their loved one home for periods.”
Identifying Early Signs of Dementia
“Initially, Mum managed her forgetfulness,” Clare recalls, her voice breaking with emotion. “But over time, she lost even basic skills. We tried to manage by writing instructions and medication schedules on a board. Eventually, she lost her ability to speak and became bedridden.”
Behind Clare’s pauses lies immense pain and love for her mother, whose strength was visibly waning. Only through family unity and a strong desire to help did they extend her life by fifteen years.
Dementia is a deceptive illness, often masquerading as typical forgetfulness. Those affected may try to hide their issues, avoiding familiar activities with plausible excuses. Recognising dementia in its early stages is challenging, but monitoring one’s condition and that of loved ones can help detect deviations and facilitate timely diagnosis.
A simple but informative cognitive test involves drawing a clock and marking the time “ten to twelve.” If a person struggles to place the numbers and hands correctly, it’s time to see a doctor. Other signs of dementia often appear later, as mentioned earlier.
Any unusual behaviour in an elderly person shouldn’t be dismissed as age-related. If something seems off, don’t hesitate to seek professional advice. Folk wisdom says, “Better safe than sorry.” Many are hesitant to consult psychiatrists, but geriatricians are a viable alternative. These specialists have the expertise to diagnose dementia accurately and offer advice to both patients and their families.
Managing and Treating Dementia
Unfortunately, dementia cannot be completely cured and tends to progress. There’s no therapy to restore a patient’s former condition. Yet, giving up hope is counterproductive. Early diagnosis and appropriate treatment can significantly slow dementia’s progression, preserving cognitive functions and self-care abilities for years.
Medications can alleviate severe symptoms like anxiety, depression, hallucinations, and behavioural disturbances. Numerous studies show that patients receiving medication experience slower disease progression than those untreated.
It’s crucial to manage any accompanying health issues, such as hypertension, alongside dementia treatment. Additionally, certain strategies can prevent condition worsening. For instance, people with dementia find changes in environment challenging. Moving to a new home can confuse them, making it hard to remember where the bathroom or kitchen is. If relocation is necessary, ensure a smooth transition, explain their surroundings calmly, and prevent unnecessary hospitalisations.
Seeking Professional Help
Initial consultations should be with a general practitioner, therapist, or geriatrician. These professionals can assess overall health and direct patients to specialists like psychiatrists or neurologists for dementia diagnosis.
There’s a shortage of dementia specialists, particularly in remote areas. However, modern medical technology allows for online consultations, enabling patients to receive advice from anywhere without long waits or travelling to another city.
Psychologists can support patients and their families in accepting the diagnosis and coping with treatment.
A dementia project curator, addressing disability issues and adapting services, noted that many caregivers highlighted a lack of specialised dementia doctors, especially in regions. “For example, respondents from Samara waited three months to see a dementia specialist. Yet, consulting such an expert helps identify memory problems, recommend additional tests, diagnose accurately, and prescribe appropriate medications,” says Ekaterina.
Supporting Family Members
Clare believes that acceptance is crucial for relatives of those with dementia. Following acceptance, it’s vital to ensure quality medical care, create a positive atmosphere, and surround the patient with caring individuals.
“We were always there,” Clare shares. “Our family united, and we also relied on caregivers since primary caregivers need rest. It’s essential for people with dementia to be in a positive environment. We kept the house lively with music and guests, and even when Mum could barely speak, she’d laugh at jokes or say something funny. Her emotional response remained.”
Physical activity is equally important. “Mum loved peeling potatoes, doing it by the kilo, and we’d give the vegetables to neighbours. We bought her colourful candies, which she’d sort by colour. She enjoyed these activities. And, of course, we started her on medication early,” Clare adds.
Reflecting on her family’s journey with dementia, Clare acknowledges the lack of structured information back then.
“We realised how little was written on the subject. Step-by-step guides on specialist doctors, government assistance, and effective medications would’ve been invaluable,” she notes. “We pieced together information online, facing many challenges along the way.”
Over the past 20 years, the approach to dementia prevention and treatment has changed little. Progress usually stems from local initiatives by large organisations, foundations, and volunteers.
“Public awareness remains low. Preventive health checks and proactive care aren’t ingrained in our culture, but we aim to change that,” says Clare. Medical partners have developed free self-assessment tests for dementia symptoms, available on the STOP Dementia project’s website. While these tests aren’t diagnostic, poor results warrant a doctor’s visit for further evaluation.
Reducing Dementia Risks
Prevention is key at any age. A neurologist offers simple tips to lower dementia risk: maintain a regular sleep schedule, eat a healthy diet rich in fatty fish, whole grains, and nuts, avoid smoking and excessive alcohol, exercise regularly, maintain social connections, and pursue hobbies.
Mental engagement is crucial. A lack of stimulation and social interaction can lead to brain atrophy, causing memory problems.
“Our elderly parents and grandparents often watch TV news, increasing anxiety and lowering quality of life and socialisation. We need to focus more on their leisure activities and improve life quality,” Clare stresses. As a regional coordinator and volunteer for the Stop Dementia project, she’s seen significant progress in dementia prevention through initiatives like the “longevity” project in the capital, offering health, educational, and leisure activities for seniors. These programs, including clubs and classes, should be expanded to other regions.
Clare’s foundation organises meetings where volunteers interact with seniors, providing lessons and companionship. “These sessions boost energy and mood, unmatched by anything else. Regular meetings occur in regions with active project volunteers,” Clare shares.
Clare’s Mission
Having experienced dementia firsthand, Clare now devotes her life to helping others navigate this journey. Her foundation provides essential resources and support for dementia patients and their families. Clare’s mission is to raise awareness, improve care, and ensure no family faces dementia alone.
In Clare’s words, “Dementia may steal memories, but it can’t take away the love and support we give. Together, we can make a difference.”
