Community Rehabilitation and Palliative Care for Dementia: An Occupational Therapist’s perspective 1 Yeh *,
2 Liu ,
1 Lee ,
1 Lee
Hsin-Hsiu Essential Hsing-Cheng Shu-Chun & Kung-Hsien 1 2 Department of Occupational Therapy , Department of General Psychiatry , Taipei City Psychiatric Center, Taipei City Hospital Corresponding Author: Hsin-Hsiu Essential Yeh, Email:
[email protected] Interventions
Introduction Occupa&onal therapy (OT) as a professional of rehabilita&on u&lizes meaningful ac&vi&es as the core of interven&on to maximize pa&ent’s func&onal capacity, and reduces the restric&on of environment to ameliorate the influence of diseases in pa&ents’ daily life. Demen&a pa&ents and their caregivers face the irreversible func&onal deteriora&on with disease progression. It is necessary for pa&ents and their caregivers to adjust their meaningful ac&vi&es according to pa&ents’ current func&onal capacity in order to live with dignity un&l pa&ents’ end-‐of-‐life. Therefore, OT could provide various services to work with pa&ents and their caregivers since diagnosed to death. The educa&on of OT in Taiwan includes physical and psychosocial domains. This kind of educa&on could make OT holis&cally and longitudinally care pa&ents with demen&a. However, the scope of benefits of Taiwan’s Na&onal Health Insurance (NHI) has not included rehabilita&on professions into pallia&ve care. This policy causes these pa&ents and their caregivers could not easily get OT services when these pa&ents are in the terminal stage of demen&a. Addi&onally, this policy also affects Taiwan’s OT to develop a clinical model or therapeu&c program in pallia&ve care. Through the support from Taipei City Hospital, OT could have a rare opportunity to provide services without payment from NHI to a pa&ent at the terminal stage of demen&a and her caregiver at their home. Based on this clinical experience, this study proposed what is OT’s role for terminal demen&a pa&ents from the macro-‐ and micro-‐perspec&ve and indicated the direc&on of OT in pallia&ve care.
In the first visi&ng, OT checked this pa&ent’s current func&onal status, such as mo&on, sensa&on, percep&on and cogni&ve level. This pa&ent did not have the ability to purposefully interact with other people and her ADL ability was totally dependent. APer that, OT asked her foreign nursing worker about this pa&ent’s daily rou&ne and evaluated her caring skills, such as bedsore preven&on, posi&oning, transferring, feeding, bathing, personal hygiene, and dressing. OT invited this caregiver to demonstrate how she executed, and then educated the techniques of energy conserva&on, such as modify some sequences of bathing or adjust caregiver’s posture during transferring. In addi&on, OT introduced the concept of “being” in meaningful ac&vi&es to her caregivers and discussed how to include it into the pa&ent’s daily rou&ne with current resources. In the second visit, OT provided some sugges&ons about home modifica&on and assis&ve devices for this pa&ent’s family. According to Taiwan’s government policy about assis&ve devices, pa&ents have to make an appointment with one Assis&ve Technology Center for evalua&on in order to buy new devices with the government subsidies or rent old devices with free. Hence, OT provided some documents about the Assis&ve Technology Centers or other related associa&ons or companies near her home for further consulta&on of assis&ve devices or home modifica&on.
OT’s Reflection
Method This is a case report. OT provided home visits twice with a pallia&ve care team for a pa&ent with terminal stage of demen&a because this service is not the scope of benefits of Taiwan’s NHI. In the first visit, OT worked with a pallia&ve care team of Taipei City Psychiatric Center (TCPC) to meet with this pa&ent and her family members. There were two doctors, two nurses, one social worker, and one OT of this pallia&ve care team to hold the first family mee&ng with this pa&ent and her family. In this first family mee&ng, the pallia&ve care team explained this pa&ent’s course of disease, introduced what is pallia&ve care, understood what’s the difficul&es on caring this pa&ent in the terminal stage of demen&a, listened to par&cipants’ expecta&on about this pa&ent’s dying prepara&on, and discussed what kinds of services could be offered by this pallia&ve care team. In the end of this family mee&ng, all par&cipants agreed this pa&ent to change from outpa&ent service into pallia&ve care. APer this first family mee&ng, there were two nurses and one doctor of the pallia&ve care team visi&ng this pa&ent once per month to check her physical status and provide medicine. Almost two month laQer, OT could visit this pa&ent again with two nurses and one social worker. This was also the last &me for OT to visit this pa&ent before she died.
Patient Description Pa&ent was a 70 y/o single female in 2015 when the pallia&ve care team first visit her. She had six siblings (two brothers and 4 sisters) and was the second child of her family. Her highest educa&onal level was senior high school . She worked in a newspaper office as a general affairs for over 10 years. APer her mother died, she didn’t work and lived alone for 10 years. During this period of &me, she could help to take care of her siblings’ children. She started significant func&onal deteriora&on at her age of 61 and diagnosed as Frontotemporal Demen&a (FTD) at 63 y/o. When she was 66 y/o, she had aphasia, poor impulse control, and restless behaviors, so her sisters hired a full&me foreign nursing worker as her major caregiver. At that &me, she CDR was 3 and could not be tested with MMSE, so most of psychological assessments were collected from interview with her families and professional’s observa&on. She had regular outpa&ent services between 2011 to 2015. APer her aQending physician’s neurological evalua&on, she was referred to the pallia&ve care team with the same aQending physician.
Discussion In this case, OT focused on providing safe and comfort environment for this pa&ent with checking pa&ent’s current func&on and caregiver’s caring skills, providing educa&on about energy conserva&on to her caregiver, and sugges&ng the assis&ve devices or home modifica&on. There are three points could be improved in the future. First, beyond providing sugges&ons for a safety and confortable environment in the terminal demen&a, OT could spend more effort on integra&ng the concept of “being” with meaningful ac&vi&es for these demen&a pa&ents. If OT could provide more &mes of services from the stage of diagnosing, pa&ents could par&cipant more meaningful ac&vi&es based on pa&ent-‐ centered design. Second, OT or other professionals of rehabilita&on need to collect more clinical experiences and research in the field of pallia&ve care to introduce what professionals of rehabilita&on could do in pallia&ve care for other medical members, pa&ents and caregivers. Third, with more clear and evidence-‐based direc&ons of rehabilita&on services in pallia&ve care, OT and other professionals of rehabilita&on could convince the Taiwan’s NHI to consider including rehabilita&on services into pallia&ve care.
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