Assessing the Quality of End-of-Life Care for Older Persons with Advanced Dementia Living in the Community

Dementia is one of the most prevalent and devastating illnesses affecting older persons. According to a survey conducted by Myers-JDC-Brookdale Institute, approximately 5% of community-dwelling older persons had advanced dementia. Studies conducted all over the world have found that older people with advanced dementia (OPsWAD) and their caregivers have substantial unmet needs and multiple problems with the quality of services they receive, such as treatment of physical symptoms and behavioral problems, and making difficult decisions regarding treatment and placement, which place a great burden on the family. In Israel, there is only anecdotal evidence of the quality of care for these patients. The goals of the study were to examine – for the first time in Israel – the quality of care provided by the health services to OPsWAD living in the community and to identify unmet needs of these patients and their families.

The patients were identified from a list of members of one of the health plans and from the patient roster of the homecare program in the same health plan. Interviews were conducted with 117 family members of OPsWAD – 65 were caring for a patient living at home and 52 had cared for a patient at home until his/her death 3-6 months before the interview. The average age of the patients was 87.

The findings indicate that OPsWAD living in the community and their families have considerable unmet care needs:

  • 64% of the patients suffer from pain, 64% had cracked skin that could turn into pressure sores, 57% were in depression, and 56% were restless and agitated. Moreover, 73% of those who had died had suffered from discomfort close to death, 67% had problems swallowing and 55% suffered shortness of breath.
  • The family members reported a particularly low level of satisfaction with regard to receiving explanations on the patient’s condition and contact with the medical team. For example, 86% did not always know which physician or nurse was responsible for the care and 58% felt that their relative needed better medical homecare.
  • 74% of the family members described the care burden as “heavy” or “very heavy,” and 43% reported that caring for the patient was a heavy or very heavy financial burden.
  •  Only 20% had written advance care directives in the event that they would be unable to express their wishes for medical care and only 22% had a power of attorney with a lawyer. In addition, only 15% of the caregivers reported discussing advance care planning with a professional from the medical team.

The findings indicate the need to formulate a comprehensive policy for the development of the services needed to improve the quality of care of the patients and to reduce burden on the families. It is particularly important to establish criteria for referral to palliative services and introduce incentives for such referrals.  Equally important is the promotion of awareness of advance care plans and ways to put them into practice.

The findings will contribute to two current national initiatives: The National Program for Treatment of Patients with Dementia, which is currently being implemented by the Ministry of Health, and a new national program of palliative care for people with terminal illnesses, which is in the planning stages as a joint initiative of the Ministry of Health, JDC-ESHEL, and the Myers-JDC-Brookdale Institute.

The study was funded with the assistance of the Helen Daniels Bader Fund of Bader Philanthropies of Milwaukee, Wisconsin.

Citing suggestion: Bentur, N., Sternberg, S., & Shuldiner, J. (2015). Assessing the Quality of End-of-Life Care for Older Persons with Advanced Dementia Living in the Community. RR-652-15. Myers-JDC-Brookdale Institute. (Hebrew)