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Neuropalliative Care pp 279–292Cite as

Caregiver Assessment and Support

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Abstract

Neurologic illnesses do not just affect the patient but also family, friends and other members of the patient’s community. These persons are impacted by seeing the suffering of a loved one and by changes in their relationship with the patient. Depending on the needs of the patient, they may also find themselves in the role of a caregiver. Informal caregivers frequently improve the lives of patients and allow them to achieve goals of care (e.g. remaining at home) not otherwise possible. Informal caregivers can be significantly impacted by this role and sustain an increased risk for adverse physical and mental illness as well as burnout. The neuropalliative care approach thus strives to not only provide patient-centered care but also family-centered care and support for informal caregivers. As such, neurologists and all clinicians caring for patients with neurological illness should strive to assess and support the patients’ caregivers given their vital role in providing optimal care and support for the patient. In this chapter, we review the increasing role informal caregivers play in our healthcare system for neurologic illnesses and the impact this role has on caregivers’ physical, emotional, social and spiritual wellbeing. We will review the most common needs expressed by caregivers as well as techniques for rapidly assessing these needs in a clinical setting. Lastly, we will discuss how to provide support for informal caregivers, including when to draw in additional multidisciplinary resources.

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Notes

  1. 1.

    We will use the term “caregiver” hereafter to refer specifically to informal caregivers (that is, those that are not health care professionals and remain unpaid). The term “caregiver” may, in some sense, be denigrating to the close bond that informal carers and their loved ones’ share. The term “care-partner” is a newer term favored by some advocates that may be more respectful of the carer’s experience and journey (Olson [1]).

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Authors and Affiliations

  1. Blood Cancers and BMT Program, Division of Hematology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

    Timothy S. Sannes PhD

  2. Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

    Benzi M. Kluger MD, MS, FAAN

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  1. Timothy S. Sannes PhD
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Correspondence to Timothy S. Sannes PhD .

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Editors and Affiliations

  1. Assistant Professor, Department of Neurology, University of Washington Harborview Medical Center, Seattle, WA, USA

    Claire J. Creutzfeldt

  2. Professor of Neurology, Chief Neurology Supportive and Palliative Care Section, Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

    Benzi M. Kluger

  3. Professor and Edward A. and Alma Vollertsen Rykenboer Chair, Department of Neurology, University of Rochester Medical Center, Rochester, NY, USA

    Robert G. Holloway

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Sannes, T.S., Kluger, B.M. (2019). Caregiver Assessment and Support. In: Creutzfeldt, C., Kluger, B., Holloway, R. (eds) Neuropalliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-93215-6_20

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