Older Adult Considerations in hEDS

While hypermobile Ehlers-Danlos (hEDS) is often diagnosed in childhood or early adulthood, its symptoms persist into older age and may evolve significantly. In older adults, the interaction of age-related physiological changes, multimorbidity (the presence of multiple chronic conditions), and polypharmacy (the use of five or more medications) presents unique challenges in diagnosis, treatment, and long-term management.

For the purposes of this article, “older adult” refers to individuals aged 60 and older, including those living independently, receiving in-home assistance, or residing in long-term care or institutional settings.

Clinical Features in Older Adults with hEDS

• Joint hypermobility often diminishes with age due to connective tissue stiffening

• Despite reduced mobility, joint instability, subluxations (partial dislocations), and full dislocations often persist

• Higher rates of secondary osteoarthritis, tendinopathy (tendon degeneration), and degenerative disc disease

• Pain becomes more chronic, widespread, and disabling, often with neuropathic (nerve-related) features

• Increased fatigue, sleep disturbance, and functional decline

• High risk of falls due to impaired proprioception (sense of joint/body position), balance issues, and sarcopenia (age-related loss of muscle mass)

• Skin changes include easy bruising, atrophic (thin and fragile) scarring, and delayed wound healing

• Autonomic dysfunction (e.g., POTS: postural orthostatic tachycardia syndrome, and orthostatic hypotension: a drop in blood pressure when standing) may worsen due to aging and medications

• Common neuropsychiatric symptoms: anxiety, depression, and social isolation

Diagnostic Challenges in Older Adults

• Beighton score (a standard measure of joint hypermobility) is less sensitive with aging—joint laxity declines naturally over time

• May no longer meet diagnostic thresholds despite lifelong symptoms

• Modified criteria suggested:

  • Lower Beighton score cutoff

  • Emphasis on historical hypermobility, past dislocations/subluxations

  • Use of structured historical questionnaires and collateral (family or caregiver) reports

• Must rule out other conditions mimicking hEDS (e.g., Parkinson’s, arthritis, osteoporosis)

• Extra-articular (outside the joints) features such as GI symptoms, autonomic dysfunction, and mast cell activation should be considered

Comorbidities and Polypharmacy

Older adults with hEDS often have

• Cardiovascular disease

• Osteoporosis

• GI disorders (e.g., gastroparesis: delayed stomach emptying, and constipation)

• Psychiatric conditions (anxiety, depression)

• Autonomic dysfunction

Polypharmacy (5+ medications) increases risk of:

• Falls, delirium (sudden confusion), and drug interactions

• Nonadherence (not taking medications as prescribed), hospitalizations

• Worsening of dysautonomia and fatigue

Use medication review tools (e.g., Beers Criteria and STOPP/START guidelines) to:

• Discontinue inappropriate medications

• Optimize medication regimens

• Avoid drugs with anticholinergic (nerve signal blocking) or sedating effects

Management Strategies

• Multidisciplinary, individualized care is essential

Physical therapy

• Adapted to age, function, and comorbidities

• Include resistance, balance, and proprioception exercises

• Focus on low-impact, closed-chain movements (where the limb is fixed against a surface, like a wall or floor)

Occupational therapy

• Promote independence and safety

• Modify home environment

• Recommend assistive devices

Pain management

• Prefer non-pharmacologic strategies: PT, dry needling, cognitive behavioral therapy (CBT)

• Avoid benzodiazepines, opioids, and tricyclic antidepressants when possible

Nutritional support

• Protein intake: 1.2–1.5 g/kg/day (unless contraindicated by chronic kidney disease)

• Fortified foods/supplements for institutionalized patients

Psychological care

• CBT and psychological support to manage pain and mood

• Avoid medications with high anticholinergic burden

Rehabilitation in Older Adults

• Key goals: improve function, reduce pain, increase quality of life

Effective elements

• Individualized programs with low-impact exercise

• Supervised therapy in institutionalized settings

• Use of adaptive equipment, proprioceptive training

• Inspiratory muscle training (breathing muscle strengthening) in some cases

Support adherence

• Home-based regimens with supervision

• Education for patients and staff

• Emphasize safety and gradual progression

Rehabilitation in Older Adults

Preventive and Early Interventions

• Focus on maintaining independence and reducing complications

• Components

  • Patient education and pacing

  • Joint protection and environment modification

  • Early PT/OT referral

  • Fall risk screening and osteoporosis management

  • Medication review to reduce polypharmacy

Institutional Care Considerations

• Adaptations required in nursing homes

  • Environmental: grab bars, flooring, lighting

  • Clinical: customized exercise, nutritional support

  • Medical: non-opioid pain control, med reviews

• Staff training on

  • Safe transfers and joint protection

  • Recognition of autonomic, GI, and neuropsychiatric issues

Rare or Underrecognized Risks

• Pressure ulcers due to skin fragility and immobility

• Atypical fractures linked to osteoporosis and recurrent falls

• Severe autonomic crises in response to baroreceptor failure or medication effects

• Pelvic floor disorders: incontinence, prolapse

• Neuropsychiatric decline due to isolation, pain, or cognitive burden

Caregiver Burden and Social Support

• High due to

  • Physical dependence

  • Complex medication and symptom management

  • Emotional toll of chronic illness

• Interventions

  • Psychoeducation, CBT, peer support

  • Formal caregiver services

  • Community or digital support networks

Prognosis and Functional Outcomes

• Older adults more likely to have

  • Persistent pain

  • Reduced mobility and independence

  • Greater comorbidity burden

• With therapy, functional gains are still achievable

• Life expectancy not clearly reduced by hEDS alone

Evidence Gaps

• Lack of age-specific research and guidelines

• Uncertainty around optimal rehab protocols, med regimens, and pain management in older adults

• Need for:

  • Randomized controlled trials

  • Consensus criteria for older adult diagnosis

  • Geriatric-specific clinical pathways for hEDS

Summary 

Older adults with hEDS face distinct and often underrecognized challenges as they age, from altered symptom presentation to increased risk of falls, polypharmacy, and functional decline. Diagnosis is complicated by decreased joint mobility, and treatment must be adapted to aging physiology. With individualized, multidisciplinary care and attention to preventive strategies, functional outcomes and quality of life can be significantly improved. Future research should prioritize age-specific guidelines, inclusive diagnostic criteria, and management protocols tailored to this vulnerable and growing population.