Home Hospice Helps Dementia Patients and Reduces Caregiver Burden, Pilot Project Finds

In a study of older patients with advanced dementia living at home in Israel, researchers found that hospice care was associated with a significant improvement in caregiver burden, perceived symptom management, and satisfaction with care among participants’ families.

The authors believe research such as this may help improve awareness that dementia is a terminal illness, and that older people with advanced dementia could benefit from hospice and palliative care.

Older patients with advanced dementia were eligible for the study if they were considered stage 7 or higher on the Global Deterioration Scale, referred to hospice, and had a full-time caregiver.

Related: Hospice Eligibility Guidelines for Patients with Dementia >

Participating patients’ existing home care was supplemented by hospice care. For a maximum of six months per patient, a specially trained physician, nurse, social worker and spiritual care provider met with families and were available 24/7.

Families provided assessments before and after receiving hospice care. 

Among the 20 patients participating in the study:

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

Key Outcomes from Family Assessments

When comparing family members’ post-program responses to baseline assessments:

• Caregiver burden decreased substantially (12.1 vs 1.4, with lower scores signifying less burden; P < 0.001).
• Symptom management improved (post-program average score, 38.3 vs pre-program average score, 33.8; P < 0.001).
• Satisfaction with care increased (35.3 vs 27.5; P < 0.001).

Key Outcomes Identified by Hospice

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

The researchers state that “all the families mentioned that the program gave them a sense of being supported and that they would recommend it to others,” adding that many said “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.”

For families who chose to seek support from the social worker or spiritual care provider, those hospice team members were credited with improving family and patient well-being and reducing caregiver burden.

“Thinking of dementia as a terminal illness appropriate for hospice care was a cultural shift,” note the authors. This is not surprising, they add, since it is difficult to identify older patients with advanced dementia who likely have a six-month prognosis.

While the researchers point out some limitations to their study, they believe it lays important groundwork for further research. “[T]he insights regarding the impact and challenges of implementing a home hospice dementia model will be valuable internationally,” they conclude.

Source: “Home Hospice for Older People With Advanced Dementia: A Pilot Project,” Israel Journal of Health Policy Research; May 6, 2019; 8(1):42; DOI: 10.1186/s13584-019-0304-x. Sternberg SA, Sabar R, Bentur N, et al; Israel Ministry of Health, Division of Geriatrics; Sabar Health, Home Hospital and Hospice, both in Jerusalem; and Tel Aviv University, Tel Aviv, Israel.