By Pilar Hernán

Copyright hellomagazine

When we think of someone with Alzheimer’s, what comes to mind is usually an elderly person diagnosed with dementia in the later stages of life – but there’s a reality that’s challenging our perception of the disease: cases that are diagnosed in people under 50. While it does most frequently affect older adults, and early-onset Alzheimer’s is the designation for people diagnosed under 65 years of age, experts point out that symptoms can begin much earlier. When it affects younger people, it causes a different kind of seismic impact on life plans, relationships and family dynamics; if someone has years, or even decades, to go before retirement, an Alzheimer’s diagnosis is more likely to have an even greater impact on the patient’s work and social life.

“Alzheimer’s disease is the most common form of dementia and affects memory, thinking, and behaviour,” explains neurologist Dr Teresa Moreno. “Because it progresses to the point of affecting daily activities and functions, the younger the patient [when diagnosed], the more the disease will impact their daily lives. And it’s important to remember that changes are going to affect not just the patient, but the whole family.”

It does sound scary, especially if you’re in midlife, discovering symptoms like forgetting names or brain fog and worried that they could lead to something worse, but it’s important to keep in mind that a very low percentage of people diagnosed with Alzheimer’s disease fall under the early-onset category. “They’re aged between 40 and 50 years old when the disease sets in,” says Dr Moreno. “[Those patients] account for as little as about 5 per cent of Alzheimer’s cases. Those cases are often associated with a delayed formal diagnosis, rapid progression and increased age-related psychosocial needs.”

First symptoms of early-onset Alzheimer’s

As with all neurodegenerative diseases, it’s important to know the early symptoms which might go unnoticed. Symptoms may include:

Forgetting important things, particularly recently learned information or important dates
Repeatedly asking for the same information
Difficulty solving basic problems or following instructions, like keeping track of bills or making a favourite recipe
Losing track of the date or time of year
Forgetting where you are or how you got there
Difficulty with depth perception or other vision problems
Struggling to converse or find the right word when speaking
Misplacing objects and being unable to retrace steps to find them
An increase in poor judgement
Withdrawing from work and social situations
Mood and personality changes

Later-stage symptoms may include:

Severe mood, personality and behavioural changes
Increasing confusion about time, place and life events
Becoming suspicious about friends, family or carers
Having difficulty speaking, swallowing or walking
Experiencing severe memory loss

Possible causes of the disease

What factors lead to Alzheimer’s? “We don’t know what triggers the disease, but there are two proteins suspected of damaging and destroying nerve cells [in the brain],” says Dr Moreno. “Plaque buildup is caused by fragments of a protein called beta-amyloid, while the twisted fibres of a protein called tau form tangles. Plaques and tangles are almost always present to some degree in older people’s brains, but those with Alzheimer’s disease develop a much greater amount.”

She continues: “These plaques and tangles affect the parts of the brain related to memory first, but over time they progress to more areas. We don’t know why some people develop excessive plaques and tangles, or exactly how they spread and damage the brain.”

What’s the difference between early-onset and later-onset Alzheimer’s?

Alzheimer’s disease is the most common cause of dementia worldwide, and its incidence and prevalence increase with age. But what are the main differences between early-onset Alzheimer’s disease and the type of Alzheimer’s that’s detected in the elderly?

“When someone develops symptoms before the age of 65, it’s labelled as early-onset Alzheimer’s disease. While most [early-onset Alzheimer’s] patients have the sporadic form of the disease (meaning it isn’t inherited), around 10-15 per cent have a genetic form that’s passed down through families in an autosomal dominant pattern.

“Three genes have been implicated: Presenilin 1 and 2 and the amyloid precursor protein (APP) gene; a mutation in these genes leads to early-onset Alzheimer’s disease, and more gene candidates are being studied. Genetic forms of the disease tend to begin at about 30 or 40 years of age and take an aggressive course, while sporadic early-onset Alzheimer’s tends to begin after 50 years of age and generally has a similar temporal profile to late-onset Alzheimer’s disease.”

When it comes to the symptoms of the disease, the doctor points out two different categories:

Cognitive: Includes memory loss, disorientation, language difficulties, visuospatial problems, and apraxia
Non-cognitive: Includes mood changes, delusions, hallucinations, and misconduct

“Research into the differences between the neuropsychiatric symptoms of early-onset and late-onset Alzheimer’s is limited, but a few studies have found that people with early-onset experience fewer behavioural and psychological symptoms (such as agitation or depression),” Dr Moreno explains. “However, there’s no difference in the level of cognitive decline (like memory loss) between the two groups.”

Preparing for the future

Early-onset Alzheimer’s disease can have devastating effects on patients’ careers as well as on their families, both emotionally and financially. “Working patients may lose the ability to perform on the job and may be forced to retire early,” says Dr Moreno. “Financial difficulties may be further compounded if spouses or partners also need to leave their jobs to provide full-time care.”

When the disease is still in the early stages, it’s important to plan for the future before health worsens. Preparation might include:

Financial planning
Discussing current and future job responsibilities with your employer
Clarifying health insurance coverage
Getting important documents and information in order. This might include a will, lasting power of attorney and account passwords

A support network: Another crucial component

When it comes to staving off progressing symptoms, “Staying physically and mentally active, as well as socialising with other people, seems to offer some protection,” says Dr Moreno. “It’s helpful to try to stay as positive, active and mentally engaged as possible.”

The family’s role is fundamental in the case of an early-onset Alzheimer’s diagnosis. “It’s important for the patient to realise they’re not alone. It’s crucial to lean on friends and family as much as possible. Don’t hesitate to join a support group or look into specialised day centres if you think it might be helpful,” the brain specialist recommends. There are also treatments and support services that can help. These include both pharmacological and non-pharmacological treatments, psychological support, targeted activities and counselling.

Advances in Alzheimer’s treatment

Alzheimer’s is a disease that continues to raise so many questions and has so many unknowns, but scientists are relentless in their efforts to find answers, aiming to improve both the process of diagnosis and treatment. “In the future, researchers hope that biomarker studies – biomarkers are proteins in the body, or other types of markers, that reliably indicate the progress of a disease – will allow us to diagnose the disease more quickly,” says Dr Moreno.

Unfortunately, we don’t yet know how to prevent or cure Alzheimer’s disease – but it’s not all bad news. Recent studies have shown that detecting the disease early can offer better treatment options. “I recommend becoming familiar with the early warning signs and consult your doctor immediately if you’re concerned,” says Dr Moreno.

Can the progression of Alzheimer’s be delayed?

Although Alzheimer’s disease has no cure, it’s advisable to keep the mind and body as healthy as possible. To do this, Dr Moreno recommends the following:

Eat a healthy diet
Exercise regularly
Cease or reduce alcohol consumption
Reduce stress through self-care

“There are also non-drug treatments. These can include talk therapies to help with depression or anxiety,” says Dr Moreno, who recommends:

Psychotherapy: Analysing how personality, beliefs, and life experiences can affect difficult feelings, thoughts, and behaviours
Cognitive Behavioural Therapy (CBT): Finding positive ways of thinking, feeling and acting
Counselling: Talking about your concerns. Counselling can be individual, couples, or in a group environment.
Cognitive Stimulation Therapy (CST): Activities and exercises to improve memory and communication, usually in a group context
Life story work: Creating a record of the Alzheimer’s patient’s life. It’s a way to tell others who they are, and what’s important to them, and helps them maintain their identity. Life story work can be done in a book, a photo album or scrapbook, or a digital journal.

About the expert

Dr Teresa Moreno is a neurologist and member of the Spanish Society of Neurology’s Study Group on Behaviour and Dementias