A Journey Through Young Onset Dementia
A woman living with young onset dementia has shared her powerful transformation from feeling as though she had been dealt a “death sentence” upon her diagnosis to embracing the idea of “living my best life,” even as her condition continues to evolve. This revelation comes in light of recent news regarding BBC Radio Scotland presenter Janice Forsyth, who has stepped down after being diagnosed with early-onset Alzheimer’s disease.
Dementia encompasses a decline in cognitive abilities, which can stem from a variety of conditions, including Alzheimer’s, Parkinson’s, and brain tumors. It is classified as young onset dementia when it affects individuals under the age of 65. Currently, over 70,800 people in the UK are navigating life with this condition.
Ronnie Dean, a 57-year-old from Llandudno, North Wales, received her diagnosis of young onset Alzheimer’s at the age of 49. Initially, she was told to prepare for a nursing home within two years due to her condition. Reflecting on her past, Ms. Dean recalls how she used to travel extensively for work without reliance on a satnav, but post-diagnosis, she found herself becoming “very lost” while on the road. She described, “I struggled with PowerPoint, forgot my team members’ names, and even misplaced boot polish in the fridge during shopping trips.” In a candid conversation with The i Paper, she shared her journey.
After first visiting her GP at 47 and being dismissed with a suggestion of depression, Ms. Dean returned twice more before receiving her diagnosis. The experience was jarring, as she recounted, “During my 10-minute appointment with a locum, she informed me it would mark the end of my career and told me to prepare my power of attorney. She predicted I’d be in a care home within two years. At that time, I had teenage children; the implications were devastating. I left with a bag of leaflets and nothing more.”
Although the diagnosis brought a sense of relief, Ms. Dean vividly remembers locking herself in her office and crying. “One day I was fully engaged in senior management, and the next I was faced with the reality that I would need to leave my job. I felt utterly defeated,” she expressed. However, she now considers herself fortunate to have secured a full ill-health pension.
Initially grappling with feelings of despair, Ms. Dean began to find hope through research and the invaluable support of her family. She discovered options for accessing medication privately that could slow the progression of her symptoms and learned about her eligibility for benefits like a Blue Badge, assistance from specialist Admiral Nurses, Personal Independence Payment (PIP), and facilitated travel on trains. Despite her initial fears about losing her driving license, she has been able to continue driving short distances, with the only adjustment being an annual reapplication.
Today, Ms. Dean experiences “hypersensitivity to sound, which can be exhausting,” along with challenges related to depth perception. “Pouring myself a drink has become difficult as it tends to spill everywhere, and I require assistance when going upstairs. It feels like recovering from an illness takes much longer now,” she noted.
Her daughter has taken on the role of her primary caregiver and manages her finances, to which Ms. Dean stated, “I honestly don’t know what I would do without her.” Her son Will has become actively involved in fundraising for various dementia charities, further highlighting the family’s commitment to advocacy.
Despite acknowledging that dementia is a terminal condition, Ms. Dean emphasizes that young onset dementia does not signify the end of one’s life. “It marks the conclusion of the life you once envisioned, but it can also signify the start of a new chapter. I genuinely strive to live my best life,” she affirmed. While she can no longer engage with her beloved hobbies like reading and mountain climbing in the same manner, she has adapted by taking the train to the summit of Snowdon, for instance.
Ms. Dean attends a monthly support meeting in Denbigh, her hometown, where she enjoys the simple pleasures of life. “I drive myself there with my music at a low volume, and right now, I can see the snowdrops and daffodils blooming, which is simply perfect. It provides me with a sense of freedom. I cherish my time with family, but I also value those moments of solitude,” she added.
According to Katie Puckering, the information services manager at Alzheimer’s Research UK, the initial manifestations of dementia in younger individuals often present as “challenges at work or difficulties managing household tasks.” She noted that younger people may struggle with orientation during everyday activities, such as locating their car after shopping or finding their way home. “For those in their 40s, 50s, or early 60s, dementia symptoms can significantly disrupt daily life, particularly since their lives are often busier compared to those in their 70s or 80s,” she explained.
Puckering also highlighted the challenges faced by younger individuals seeking a diagnosis, as doctors may not have experience with young onset dementia, leading to potential misdiagnosis. She recommends maintaining a symptoms diary to document daily challenges, which can aid in differentiating between menopause-related issues and dementia symptoms, as they may appear similar but have different trajectories.
Understanding Young Onset Dementia
It is crucial to recognize the common causes of young onset dementia, as understanding these can help in early diagnosis and management:
Alzheimer’s Disease
- Most prevalent cause of young onset dementia, accounting for approximately one-third of cases.
- Early symptoms include memory loss, difficulty absorbing new information, and challenges in following conversations.
- Increased repetition of questions or behaviors.
- Confusion and disorientation, including getting lost easily.
- Language difficulties, such as finding the right words or understanding meanings.
- Changes in mood and behavior, including increased anxiety or agitation.
Vascular Dementia
- Second most common cause, representing about one in five young onset cases.
- Symptoms often mirror those of Alzheimer’s but may also include slurred speech and difficulties with previously simple tasks.
- Unsteadiness and alterations in walking patterns.
- Weakness on one side, particularly following a stroke.
Frontotemporal Dementia
- Accounts for roughly 12% of young onset dementia cases.
- Symptoms may involve emotional changes, such as a different sense of humor or difficulty recognizing others’ emotions.
- Inappropriate behaviors or excessive interests in new activities.
- Shifts in dietary preferences, including increased appetite.
- Memory issues may be subtle initially but can develop over time.
Dementia with Lewy Bodies (DLB)
- Represents about 10% of young onset dementia cases.
- Common signs include movement difficulties, such as stiffness and tremors.
- Visual hallucinations, perceiving things that are not present.
- Disrupted sleep patterns and vivid dreams, often characterized by restlessness.
- Changes in the sense of smell or taste.
Posterior Cortical Atrophy (PCA)
- A rare form typically affecting individuals aged 50 to 65.
- Early symptoms may involve difficulties recognizing objects from peripheral vision.
- Challenges with depth perception, causing frequent collisions with objects.
- Distorted colors or moving shapes.
Parkinson’s Disease
This condition is most frequently diagnosed around the age of 60. While not everyone diagnosed will develop dementia, if they do, it usually occurs within a decade following the initial diagnosis.
