The Spiritual Experience of Dementia From the Health Care Provider Perspective: Implications for Intervention

Abstract

BACKGROUND AND OBJECTIVES: Spiritual care aims to counter negative outcomes from spiritual distress and is beneficial to persons living with dementia. Such care needs dementia-appropriate customization. We explored the salient spiritual needs in dementia to inform future intervention development. Health care providers are well situated to observe the nature of spiritual needs across and within medical conditions. RESEARCH DESIGN AND METHODS: We conducted semistructured qualitative interviews with providers. We sampled purposively by discipline (chaplains, nursing staff, social workers, activities professionals) and religious tradition (for chaplains). Our interview guide inquired about, for example, the nature of spiritual needs in dementia and stakeholders' roles in addressing them. Inductive/deductive thematic analysis was employed. RESULTS: 24 providers participated. The thematic structure consisted of 2 themes: (a) spiritual experience in dementia differs from that in other medical conditions (subthemes: fear, profound loss of self, progressive and incurable nature, and impacted ability to access faith) and (b) the need for spiritual intervention at the mild stage of dementia (subthemes: awareness in mild dementia and its influence on spiritual distress, and a window of opportunity). DISCUSSION AND IMPLICATIONS: We learned about the potential "what" of spiritual needs and "who" and "when" of implementing spiritual care. Implications included the imperative for dementia-specific spiritual assessment tools, interventions targeting fear and loss of self early in symptom progression, and stakeholder training. Researchers should study additionally the "how" of dementia-appropriate spiritual care. Conjointly, these efforts could promote spiritual well-being in persons living with dementia worldwide.

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