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MRC Prion Unit
From fundamental research to prevention and cure
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Support for the carer

The focus of this care plan is on the supportive care rendered by family, significant others, or carers responsible for meeting the physical and/or emotional needs of the patient. With limited access to health care for many people, most diseases diagnosed and managed in the outpatient setting, and rapid hospital discharges for even the most complex health problems, the care of acute and chronic illnesses are essentially managed in the home environment. Today’s health care environment places high expectations on the designated carer, whether a family member or someone for hire. For many patients with prion disease, the main carer is a fragile spouse overwhelmed by his or her own health problems. Even in cultures where care of the ill is the anticipated responsibility of family members, the complexities of today’s medical regimens, the chronic nature of some disease processes, and the burdens of the carer’s own family or environmental milieu provide an overwhelming challenge. Carer’s have special needs for knowledge and skills in managing the required activities, access to affordable community resources, and recognition that the care they are providing is important and appreciated. Nurses can assist carer’s by providing the requisite education and skill training and offering support through home visits; special clinic sessions; telephone access for questions and comfort; innovative strategies such as telephone or computer support, or "chat groups"; and opportunities for respite care.

MRC Prion News