Does frailty need a new name?

Dear Editor,

Higher rates and earlier onset of frailty have been reported among adults with intellectual disability. The findings of a literature review indicated considerable variation in frailty definitions, demonstrating the complexity of the concept in the population with intellectual disability and variety in stances that researchers take (1).

The earlier onset of disease and the presence of long standing comorbidities such as epilepsy, mental health and gastrointestinal conditions, result in older people with intellectual disability being exposed to increasing number of medicines at younger ages with a lesser increase after 50 years of age (2). Multiple medication use is often clinically required (appropriate polypharmacy). However, exposure to multiple medicines, often prescribed by multiple specialist prescribers ( e.g. psychiatry, epilepsy, gastrointestinal) may lead to adverse effects or the ongoing use of medications no longer indicated (inappropriate polypharmacy). This is a challenge for the person with intellectual disability (who may have feeding, eating, drinking or swallowing difficulties) and their carers who may administer the medication in many different forms (tablet, inhaler, nebuliser, topical, liquid, injection etc) (3).

Core members of the interprofessional team are primary care physicians, psychiatrists, psychologists, neurologists, speech pathologists, special nurse educators, social workers, and pharmacists (4). Pharmacists may review medication reconciliation, assist in agent selection for comorbidities, verify dosing and appropriateness etc. Pharmacists can also educate patients and/or their carers regarding the many aspects of medications use. An interprofessional approach is the optimal means by which to address healthcare for people with intellectual disability (4).

Healthcare providers (both primary and acute health care) may lack specialist training in the field of intellectual disability healthcare (5). A lack of specialist training in both primary and acute health care is an important barrier to care, which may mean that healthcare providers lack knowledge and awareness of the healthcare needs of people with intellectual disabilities and/or autism. Multiple medication use (appropriate polypharmacy) and inappropriate polypharmacy exist among the population with intellectual disability at risk of frailty. However pharmacists are among health care professionals under-represented in frailty studies (6).

Pharmacists and others can optimise medication use and achieve appropriate polypharmacy if individual needs, preference and goals of care are assessed accurately and appropriately. In patients who are generally mobile and functionally independent, prescribing multiple drugs will not be problematic. In contrast, frail patients would require a different approach as the predominant goal of medical therapy may be relieving symptoms of disease progression and maintaining function. Medicines optimisation is significant to improve medication adherence through multidisciplinary working, which leads to better health outcomes and reduces medication wastage.

Frailty is common for people with intellectual disability and is best identified with measures specifically designed for this population. Frailty may affect individuals with an intellectual disability on average 20–30 years earlier than what is expected in the general population. It is paramount that this population is considered for frailty assessments at a much earlier age. Polypharmacy as a frailty factor was found it to be significantly associated with increased social care (7).

There is no standard definition or agreement about markers of the 'frailty syndrome'. However healthcare providers recognise the importance of specialist training for people with intellectual disabilities. Effective communication about medicines delivered by specialist trained, friendly, and caring pharmacists who treat people with intellectual disability and their carers with dignity is essential no matter what name is used to describe frailty.

1. Brehmer, B., & Weber, G. (2010). Frailty vs. disability distinctions in people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities., 7(1), 49–58. https://doi.org/10.1111/j.1741-1130.2010.00247.x
2. O'Dwyer M, Peklar J, McCallion P, McCarron M, Henman MC. Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population: a cross-sectional observational nationwide study. BMJ Open. 2016 Apr 4;6(4):e010505. doi: 10.1136/bmjopen-2015-010505. PMID: 27044582; PMCID: PMC4823458
3. Medication use in residential care for older people with intellectual disabilities
August 2016Learning Disability Practice 19(7):24-29 August 201619(7):24-29
DOI:10.7748/ldp.2016.e1726
4. Lee K, Cascella M, Marwaha R. Intellectual Disability. [Updated 2023 Jun 4]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK547654
5. Doherty AJ, Atherton H, Boland P, Hastings R, Hives L, Hood K, James-Jenkinson L, Leavey R, Randell E, Reed J, Taggart L, Wilson N, Chauhan U. Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review. BJGP Open. 2020 Aug 25;4(3):bjgpopen20X101030. doi: 10.3399/bjgpopen20X101030. PMID: 32605913; PMCID: PMC7465578.
6. Frost, R., Robinson, K., Gordon, A., Caldeira de Melo, R., Villas Boas, P. J. F., Azevedo, P. S., Hinsliff-Smith, K., & Gavin, J. P. (2024). Identifying and Managing Frailty: A Survey of UK Healthcare Professionals. Journal of Applied Gerontology, 43(4), 402-412. https://doi.org/10.1177/07334648231206321
7. Ahlström, G., Wallén, E. F., Tideman, M., & Holmgren, M. (2022). Ageing people with intellectual disabilities and the association between frailty factors and social care: A Swedish national register study. Journal of Intellectual Disabilities, 26(4), 900–918. https://doi.org/10.1177/17446295211037170