When we think of dementia, we often associate it with older adults. However, for some individuals, the battle against dementia can begin at an early age and stretch out over decades.

This can pose significant challenges not only for the people living with the condition but also for their families and caregivers.

What is Dementia?

Dementia is an umbrella term for a set of symptoms that affect memory, cognitive abilities, and language skills. It’s caused by damage to brain cells, which can happen due to various reasons.

Alzheimer’s disease is the most common cause of dementia, accounting for 60-80% of cases. Other causes include Parkinson’s disease, Huntington’s disease, and Creutzfeldt-Jakob disease.

Early-Onset Dementia

Early-onset dementia (EOD) is a term used for individuals who develop dementia before the age of 65.

It’s estimated that around 10% of all people with dementia have EOD, which means that around 31,000 people in the UK and 200,000 in the US have this condition.

People with EOD often experience a more rapid decline in cognitive abilities and functional abilities than those with late-onset dementia.

They may also have more physical symptoms and a higher prevalence of neuropsychiatric symptoms like depression, anxiety, and irritability.

Lifelong Struggle

For some individuals, the battle against dementia can last for decades. One such case is that of Susan Suchan, who was diagnosed with dementia at the age of 48.

Susan’s mother and grandmother had also suffered from Alzheimer’s, and Susan was aware of the risk she carried. Despite being an active and successful businesswoman, Susan began to experience difficulties with memory, getting lost while driving, and managing tasks she had previously taken for granted.

Susan’s diagnosis was a shock, but it also gave her clarity on what was happening to her. She decided to become an advocate for people with dementia, using her own experience to raise awareness and reduce stigma.

Susan started a blog called “My Alzheimer’s Story,” where she shared her journey and insights into living with the condition.

“I didn’t want my diagnosis to define me, but it’s a part of who I am now,” says Susan.

“By speaking out and sharing my story, I hope to help other people understand that dementia doesn’t have to be the end of your life.”.

The Impact on Caregivers

Dementia is not just a condition that affects the person living with it; it has far-reaching effects on their families and caregivers.

Caring for someone with dementia requires patience, compassion, and a deep understanding of the condition’s symptoms and behaviors. It can be mentally and physically exhausting, and caregivers may experience burnout, depression, and anxiety as a result.

In Susan’s case, her wife, JoSuchan, has become her primary caregiver. Jo is dedicated to keeping Susan active and engaged, taking her to museums, concerts, and community events.

She also helps Susan with daily activities like dressing, bathing, and cooking.

“It’s not always easy, but I’m honored to be Susan’s caregiver,” says Jo. “I’ve learned to be more patient and compassionate, and I cherish every moment we have together.

It’s important to remember that people with dementia are still people, with their own emotions, thoughts, and desires.”.

Managing Dementia Symptoms

While there is no cure for dementia, there are various ways to manage its symptoms and improve quality of life. These strategies include:.

Medication

There are medications available that can help manage some of the cognitive and neuropsychiatric symptoms of dementia. These include cholinesterase inhibitors, memantine, and antidepressants.

However, these medications may not work for everyone, and they can have side effects.

Supportive Therapy

Supportive therapy, such as occupational therapy, can help people with dementia maintain their independence and quality of life.

Occupational therapists can work with individuals to find ways of managing daily tasks, such as cooking, cleaning, and dressing. They can also provide advice on safety measures, like installing grab bars and removing trip hazards.

Exercise and Nutrition

Regular exercise and a healthy diet can help to improve cognitive function and reduce the risk of physical complications like falls and fractures.

Exercise can also help relieve stress and improve mood, while a healthy diet can provide essential nutrients to the brain.

Cognitive Stimulation

Cognitive stimulation, such as games, puzzles, and activities that promote social interaction, can help to improve memory and cognitive abilities. It can also provide a sense of purpose and enjoyment.

Conclusion

Dementia is a challenging condition that can affect individuals and their families for decades.

As the case of Susan Suchan demonstrates, dementia doesn’t have to be the end of life; many people find ways to maintain their quality of life and make the most of their abilities. By raising awareness and reducing stigma, we can support people with dementia and their families on this lifelong struggle.