As promised, over the coming months, in between talking about primary care and assorted miscellaneous topics, I’ll be exploring some of the issues that those of us with chronic hypophosphatemia experience once we reach retirement age. I don’t have an outline for the topics int he series yet, so there’s still time for you to raise issues for me to explore in the context of aging with chronic hypophosphatemia. I’d love to hear about your experiences as patient, caregiver, or observer of older relatives. I’m counting on your feedback, since I’d like to include more than just my own experience, and I’m a spontaneous case who, for obvious reasons, never had the opportunity to see a family member age with XLH.
For now, I’m going to start with some general information about care for older adults and think about how it may apply to us. As I sat down to write, it dawned on me that I didn’t really know much about geriatric care, even though I’ve probably qualified for it for mumbledy-many years already.
The first thing I realized I didn’t know was—What age do clinicians consider “geriatric”? I assumed there would be an easy answer to that, but there isn’t! And to the extent there is a specified age, it’s much older than I thought. I always assumed it roughly coincided with retirement age, since that’s where a lot of the aging issues crop up, but it’s more complicated than that.
Apparently, older patients are sorted into three categories with not-very-inspiring names: young-olds (65-74), middle-olds (75-84), and old-olds (85+). The old-olds are definitely considered geriatric, and sometimes the middle-olds are too, and presumably even the youngest ones could be too, but in those categories, it’s a more subjective definition, dependent on symptoms. According to Mt. Sinai, “Often, patients who benefit the most from the services of a geriatrician have chronic illnesses, impaired physical function, impaired memory or cognitive function, depression or anxiety, weight loss, problems with balance or recurrent falls, and/or urinary incontinence.” So an 80-year-old without those issues wouldn’t be considered a geriatric patient, while someone younger who had those issues might be considered geriatric.
By that definition, my suspicion is that the average XLH patient (at least those who didn’t have access to burosumab starting in childhood) is likely to fall in the geriatric category ten to twenty years earlier than the general population. Personally, I was disabled by the age of fifty (“impaired physical function, … problems with balance or recurrent falls …”), and I remember thinking at a college reunion that I was a good ten to twenty years ahead of my classmates in terms of things like disabling arthritis, mobility challenges, and risks of falls.
I know I’m not alone, among members of the chronic hypophosphatemia community, in facing the various physical limitations (not so much the mental ones) much earlier than the general population. The Voice of the Patient report from the Symposium on Hypophosphatemia documents those limitations well before age eighty-five (the definitively geriatric category), through testimony relating to both first-hand experience and second-hand observation. For example, Gale, in her seventies at the time, said that her back pain had increased over the years, limiting her ability to bend, until her husband took over all the heavy housework and laundry, with her capable of only the lighter housework (“household clutter, cooking, folding of clothes, and dusting”). Another not-even-young-old patient, Ramon, in his fifties, testified that he’d felt a decrease in his energy, stamina, and range of motion starting in his early thirties, and his surgeon told him that his x-rays looked like the bones of a seventy-year-old. Another patient, Elaine, had trouble with almost all the basic activities of daily living and couldn’t do independent things such as shopping and meal preparation by her sixties.
Patients who have an extended family with XLH reported their observations of severe decline much earlier than the old-old category. Ramon saw his mother transform from a working mother raising her own four children and three grandchildren through her late fifties, into a home-bound, largely bed-ridden woman at the age of sixty-five. By then, she was unable to bear her own weight to stand, even with assistance, let alone walk with a cane or walker. Similarly, Kelly watched her grandfather slowly worsen and became home bound in his later years of life due to calcifications that limited his range of motion so much that he couldn’t manage his own daily self-care.
I’m hopeful that the youngest generation, those born from around 2015 on, with access to burosumab well before their growth plates closed and the ability to stay on treatment as long as it’s helping them, will age less traumatically, but those of us born before then will likely experience disability well ahead of the expected schedule for the general population even if we’re on burosumab to slow the progression.
Ultimately, my impression is that aging XLHers need to look to the extent of our medical issues, rather than a specific age range, in deciding whether to seek a geriatric consultation. Apparently it’s common for patients to see a geriatrician once or a few times early on after qualifying for the services, without necessarily needing ongoing appointments, at least until they reach the old-old category. It all depends on the specific symptoms the patient is experiencing and the issues that they may wish to address.
According to the Mt. Sinai website linked above, the most common issues presented by a geriatric patient are: “Dementia, delirium, falls, polypharmacy (using multiple drugs to treat a single condition or illness), coordination, confusion and agitation, and coronary heart disease.” They recommend seeing a geriatric specialist if the patient’s “medical condition causes considerable impairment and frailty; if their required list of prescription medications has grown, making it unclear which are appropriate; and/or if family members and friends feel considerable stress as caregivers.”
Many of us would meet those criteria easily by our sixties: falls, polypharmacy, coordination, “considerable [physical] impairment and frailty; … and family members and friends [who] feel considerable stress as caregivers.”
So, once you’ve decided you count as a geriatric patient, what does that even mean in terms of taking action? Next month (unless I hear a suggestion for something else basic that I should address first), I’ll be looking into “what do geriatric specialists do, and how could aging XLHers benefit from a consultation, or are there other healthcare options to pursue?” And I hope to have a rough outline for the remainder of the series, so you’ll know what to expect down the road, both from this series and from future healthcare challenges!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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