Pilot Project Shows Home Hospice Care Helps Dementia Patients and Reduces Caregiver Burden

Older patients with advanced dementia living at home in Israel were evaluated in a study published in the Israel Journal of Public Health Research, and researchers found that hospice care was associated with significant improvements in caregiver burden, perceived symptom management, and satisfaction with care among participants’ families. Older patients with advanced dementia were eligible for the research study if they were regarded as stage 7 or higher on the Global Deterioration Scale, were referred to hospice, and already had the assistance of a full-time caregiver.

The researchers hold that this research can assist in not only improving awareness that dementia is a terminal illness, but also that hospice and palliative care can be extremely beneficial to older people with advanced dementia.

The existing home care of the participating patients was augmented with hospice care. For a maximum of six months per patient, a specialty trained physician, nurse, social worker and spiritual care provider met with families and were available to them at all times, and families provided evaluations before and after receiving the hospice care.

Of the study’s 20 participating patients:

• Average age was 83.5
• 70% were women
• Multiple chronic comorbidities were present (65% with hypertension; 40% with ischemic heart failure; 30% post-stroke; 30% with diabetes; 15% with COPD; and 15% with cancer)
• Patients had been diagnosed with dementia for an average of 5.6 years

Key Outcomes from Assessments by Families:

In comparing family members’ responses (post-program) to baseline assessments:

• Caregiver burden decreased substantially
• Symptom management improved
• Satisfaction with care increased

Key Outcomes that were Identified by Hospice:

• Although five hospitalizations occurred during the study period, the hospice team identified what they considered to be 33 “prevented” hospitalizations
• An average of 2.1 medications per patient were determined to be unnecessary, and then discontinued

The researchers explained that “all the families mentioned that the program gave them a sense of being supported and that they would recommend it to others,” and that many stated “they felt more comfortable caring for their loved one at home, that suffering had been decreased, and that they learned more about the trajectory of dementia.”

Also, the hospice team was acknowledged for improving the family and patient well-being and reducing caregiver burden for the families who sought support from the social worker and/or spiritual care provider.

Although it is not surprising, given it is difficult to identify elderly patients with advanced dementia who likely have a six-month prognosis, the researchers identified that “thinking of dementia as a terminal illness appropriate for hospice care was a cultural shift.”

While the researchers designate some limitations to their study, they believe it lays an important foundation for further research, stating that the information regarding the impact and challenges of executing a home hospice dementia model will be significantly valuable in the future on an international level.

References

Sternberg, S. A., Sabar, R., Katz, G., Segal, R., Fux-Zach, L., Grofman, V., Roth, G., Cohen, N., Radomyslaski, Z., & Bentur, N. (2019). Home hospice for older people with advanced dementia: A pilot project. Israel Journal of Health Policy Research, 8 (42). https://doi.org/10.1186/s13584-019-0304-x.