Navigating amyloidosis treatment can be challenging for older adults
Systemic gaps must be addressed to avoid compounding the existing burden
Written by |
As an advocate for the New Zealand Amyloidosis Patients Association since 2019, I am acutely aware that when there is no center of excellence or coordinated care structure in a country, it compounds the already heavy burden on diagnosed individuals, particularly older couples trying to navigate this devastating disease. Even worse, the diagnosed patient is sometimes either widowed or single and has no one to attend appointments with.
People diagnosed with transthyretin amyloidosis (ATTR), particularly wild-type, tend to be in their late 60s and older. With the hereditary type, depending on the variant, some people may start showing symptoms in their early 30s. In my late husband Aubrey’s case, it manifested before he turned 50.
Based on my personal experience caring for Aubrey, who was diagnosed with hereditary ATTR, awareness among healthcare providers often begins with patients and caregivers themselves. It’s the spouse who asks, “Could the lightheadedness mean something more?” or the daughter who brings journal articles into a clinic to prompt deeper investigation. Without that layperson’s prompting, many doctors might not even consider amyloidosis on their differential diagnosis.
Looking back, I am glad that I was able to accompany Aubrey to almost all of his clinic appointments. Especially in the last few months before he passed, when he was weak and in pain, having me there made such a difference to him. However, I am acutely aware that many patients do not have a support person with them when visiting the clinician.
Some healthcare systems unprepared for complexity of disease
For many older adults diagnosed with ATTR, especially in countries without a dedicated amyloidosis center of excellence, the journey doesn’t just begin with a shocking diagnosis. It continues through a healthcare system unprepared to meet the complexity of this disease and the profound vulnerability of the people it strikes.
In nations like New Zealand, where amyloidosis treatment, wraparound medical, and support services do not exist, older patients in their late 70s and beyond often find themselves lost in a sea of specialists who have never seen the disease before. ATTR’s symptoms (fatigue, neuropathy, cardiac issues, and more) mimic so many other conditions that without awareness and expertise, the disease remains hidden, misunderstood, or dismissed. This lack of clinical recognition isn’t just inconvenient; it’s dangerous.
That reality is amplified when the patient is accompanied not by a trained advocate but by a spouse or caregiver who is also older. These caregivers, often lifelong partners, share the same age-related health limitations. They often sit in appointments feeling overwhelmed and underprepared, listening to unfamiliar medical terminology and trying to make sense of complex clinical recommendations. At the same time, their own needs can go ignored. Many are afraid to challenge the nurses and doctors.
Imagine the older spouse who cannot push back, who leaves appointments feeling intimidated, disregarded, or, at worst, bullied by clinicians who appear dismissive because they don’t understand the disease. That’s not an exaggeration. The emotional toll on both patient and caregiver is enormous. They experience confusion, isolation, fear, and a pervasive sense that the medical system views them as a nuisance rather than human beings in need of care.
More than a medical problem
The consequences extend beyond the clinic. ATTR is a progressive disease. When diagnosis is delayed because doctors don’t recognize the many and varied symptoms, opportunities for early treatment are lost, and irreversible organ damage can advance unchecked. This isn’t just a medical problem; it’s a quality-of-life crisis for older adults trying to remain independent in their later years.
Without centers of excellence to guide multidisciplinary care, coordinate diagnostics, and connect patients to specialists, the entire burden of advocacy falls on the individual and their spouse, who are already stretched thin by the daily realities of aging, illness, and caregiving.
What’s needed is not just clinical expertise, but a healthcare ecosystem that sees and supports older adults, especially those with rare diseases. This includes:
- education and awareness training for general practitioners, nurses, and specialists, so ATTR enters the clinical consciousness earlier
- integrated care pathways that link local providers with expert centers, even virtually
- patient-centred communication that recognizes the emotional, social, and educational needs of older people facing a frightening diagnosis
If we do not address these systemic gaps, older ATTR patients and their caregivers will continue to walk into appointments alone, misunderstood, and at risk of leaving the clinic feeling more helpless than when they arrived. It’s a fate that’s far too common, particularly in rare disease communities around the world.
Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.