Patients with Dementia, Pain & Hospice Care
The American Journal of Alzheimer’s Disease & Other Dementias ran an article on Pain in Hospice Patients with Dementia: The Informal Caregiver Experience. The abstract explains:
Introduction: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.
Methods: We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention.
Results: The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering.
Discussion: Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
The full article is available here or as a pdf here.
I thought the points made in the discussion were well-taken. Think about a person with dementia and her ability to communicate regarding her pain level.
[The study] findings indicate that caregivers of persons with dementia in hospice face numerous and significant challenges when it comes to managing their loved ones’ pain. Several studies have already demonstrated that the needs of people with dementia at the end of life are not fully met and that caregivers require more support at this time as they may feel exhausted and alone. Furthermore, while communication between health-care providers and caregivers is important, it does not often take place at times of crisis, affecting overall quality of care… Caregivers described uncertainty about the etiology of pain, difficulties in communicating with patients, lack of consistent guidance from health-care professionals, and secondary suffering as the factors that prevented them from properly and effectively managing pain in their loved ones. Thus, these findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
Well worth reading!