Big Rewards in Caring for Dementia Caregivers
by Caroline Cassels
Originally published by Medscape Medical News, July 21, 2014.
COPENHAGEN, Denmark—A brief psychological support program for family members who care for individuals with dementia dramatically reduces caregiver depression and anxiety, improves quality of life, and is cost–effective, new research shows.
Dr. Gill Livingston
Two–year results from a randomized clinical trial conducted by investigators at University College London in the United Kingdom showed that caregivers who received treatment as usual were 7 times more likely to experience depression and anxiety compared with those who received the Strategies for Relatives (START) program, a brief, 8-session, manual–based coping strategy intervention.
Twenty months after the study ended, individuals in the intervention group were "much, much less likely to be depressed than those in the nonintervention group. This was a massive, massive difference," said principal investigator Gill Livingston, MBChB, MD, FRCPsych. In fact, she noted that the results are so encouraging that the program is now being rolled out across England.
Dr. Livingston presented the findings here at a press briefing held at the Alzheimer's Association International Conference (AAIC) 2014.
High Rates of Depression
Approximately 70% to 80% of dementia patients are cared for at home by a friend or family member. Perhaps not surprisingly, caregiver rates of depression and anxiety are high. About 40% of these individuals become clinically depressed or anxious, said Dr. Livingston, and many others, who may not meet the threshold for depression or anxiety, nonetheless take a significant hit to their mental health and well–being.
Importantly, said Dr. Livingston, caregiver depression predicts a breakdown in patient care.
She also noted that in the United Kingdom, friends and family members of dementia patients contribute an estimated £6 billion ($10 billion USD) to annual care costs.
"We are well aware of the everyday struggle of family caregivers. Our intervention aimed to provide them with the tools to keep themselves from becoming depressed and anxious*mdash;immediately and in the long term," Dr. Livingston told Medscape Medical News.
Previous research examining the impact of the START program at 4– and 8–month follow–up and published in the BMJ in 2013 showed that the intervention was clinically effective. To determine whether it had a durable effect, the investigators examined caregiver outcomes at 2 years.
The pragmatic, multicenter, randomized trial included 260 caregivers recruited from 4 UK centers who were randomly assigned in a 2–to–1 ratio to receive the START program (n = 173) or treatment as usual (n = 87).
"We offered this program to everyone with a relative who presented with dementia at 4 different centers—3 of them were psychiatry, and 1 of them was a neurology center—because we wanted it to be something that could be used in everyday practice, so we didn't want to exclude anyone at all," said Dr. Livingston.
Study outcomes included Hospital Anxiety and Depression Scale–Total (HADS–T) scores at 2 years as well as a comparison of cost–effectiveness between START and treatment as usual.
Individuals with a degree in psychology but who were without clinical training were taught to deliver the therapy and were supervised by a clinical psychologist.
Participants underwent 8 sessions during a period of 2 to 4 months, depending on their availability. They were required to fill in and keep their own manual. The program comprised several components, including the following:
- Education about dementia, caregiver stress, and understanding patient behaviors
- Behaviors the caregiver finds difficult and generating solutions
- Communication skills
- Challenging negative thoughts
- Skills to take better care of themselves, including relaxation CDs
- Getting emotional and practical support
- Planning for the future
- Increasing pleasant activities
- Maintaining learned skills
Two years after completing the START program, the investigators found that individuals in the treatment–as–usual group were 7 times more likely to be anxious or depressed compared with those who received the intervention.
In addition, the researchers report, quality of life, as measured by the Health Status Questionnaire–Mental Health, was higher for caregivers in the intervention group vs the treatment-as-usual group (difference in means = 4.09; 95% confidence interval, 0.34 – 7.83).
The investigators also examined the cost-effectiveness of the intervention. Cost, said Dr. Livingston, is an important issue, "because in the end, interventions have to be affordable, or people don't get them."
The cost analysis revealed that the cost of the intervention was £232 ($396 USD) per caregiver. Dr. Livingston reported that overall caregiver costs during a 2–year period were £170 ($290 USD) higher in the intervention group. However, she noted, overall patient costs were £571 ($975 USD) lower in the intervention group, owing to less utilization of services.
"Many, many people in the adult population are family carers of someone with dementia. It is not something we necessarily grow up having an ambition to do, but it is something we are doing. Policy is that families will remain frontline providers of unpaid support for people with dementia. This intervention is cost neutral, it significantly improves family carer mental health, and it should be widely available," said Dr. Livingston.
She added that her team intends to conduct a 7–year follow–up study to determine the impact of the START intervention on long–term patient outcomes, including admission to nursing homes and dementia outcomes.
Commenting on the study, press conference moderator Ralph Nixon, MD, chair of the Alzheimer's Association Medical and Scientific Advisory Council, professor of psychiatry and cell biology and director of research at the Center for Dementia Research at the Nathan S. Klein Institute for Psychiatric Research, said the results underline caregivers' value in allowing dementia patients to remain at home longer.
Dr. Ralph Nixon
The study results, said Dr. Nixon, demonstrate the importance of preserving the mental health of these individuals—not only for their own sake but for the sake of dementia patients.
As dementia progresses, he said, caregivers' mental health is at increasing risk. He noted the START program findings show that preparing caregivers for what lies ahead, teaching them the necessary coping skills, and ultimately preserving their mental health will result in better care and reduced need for medical services in dementia patients and allow them to stay at home longer.
Dr. Livingston and Dr. Nixon report no relevant financial relationships.Alzheimer's Association International Conference (AAIC) 2014. Abstract P4–345. Presented July 16, 2014.