The Dementia Caregiver: Improving their Mental Health and Quality of Life

There are few harder things than being a caregiver for a family member with dementia.   These caregivers are the unsung heroes of the US health system.   Because of family caregivers, 2/3 of persons with dementia are able to continue living at home, often avoiding nursing home care until dementia is very advanced. 

Nursing home care is hugely expensive, and much of the cost in the US is paid by Medicaid.  Next time you hear about how Medicaid nursing home costs are big contributors to federal and state budget crises, remember that without caregivers these costs would at least double. 

But while caregivers of dementia patients are unsung heroes, they are also forgotten heroes.   The US medical system does little to help them.  And they need help.  Dementia caregiving is very stressful and numerous studies have shown negative health consequences in caregivers.  Most prominent is depression.  Caregivers of dementia patients often meet clinical criteria for a diagnosis of major depression. 

This is what makes a recent study in the British Medical Journal (BMJ) so important.  It shows that a pragmatic intervention grounded in counseling and psychological support helps reduce rates of depression in dementia caregivers.  The study was led by Dr. Gill Livingston of University College in London, and based on an intervention protocol developed by Dr. Delores Gallagher-Thompson of Stanford University. 

The study randomized 260 dementia caregivers in London England to the intervention or usual care.  Most of the caregivers were women (70%), either the spouse or an adult child.

The intervention consisted of 8 therapy sessions, usually delivered in the home.  A really neat feature of this intervention:  Psychology graduate students who had no prior clinical experience delivered it.  This nicely supports the feasibility of the intervention as a wide range of persons can be trained to deliver it.

Key features of the intervention, adapted from a manual developed by Dr. Gallagher Thompson were as follows:

• Teaching caregivers about dementia and helping them understand the behaviors of dementia patients
• Discussion of behaviors caregivers found difficult and training in behavioral management techniques
• Teaching skills to help caregivers take better care of themselves such as changing unhelpful thoughts, relaxation techniques, assertive communication, promoting acceptance, and positive reframing
• Engagement in advance care planning by preparing for future needs
• Teaching the caregiver to incorporate small pleasant activities into the caregiving day

Caregivers were given “homework” between sessions such as practicing relaxation techniques, identifying triggers and reactions to challenging behaviors, and identifying and challenging negative thoughts.  The caregiver and therapist both worked from a manual, which the caregiver filled out over the course of the intervention.  The intervention showed the following beneficial effects:

• Caregivers who participated in the intervention had reduced levels of depression and anxiety symptoms
• Intervention caregivers reported significantly better quality of life
• The intervention showed a promising trend towards fewer abusive behaviors directed at the caregiver from the family member with dementia

If this intervention were a drug, it would be on the fast track to approval and a pharmaceutical company would be on track to earn billions of dollars.  But alas, it is not a drug.  Therefore, this beneficial program will not be available to the vast majority of dementia caregivers in the US. 

A note to the Alzheimer’s Association: 

Lobbying CMS to pay for this and other proven caregiver support interventions would be a most worthy use of the Association’s advocacy efforts.  Wouldn’t it be best to focus the Association’s advocacy efforts on worthy initiatives that will really benefit Alzheimer patients and caregivers?  This sure seems like a much more worthy advocacy effort than lobbying CMS to pay thousands of dollars a pop for Amyloid PET Scans. 

Shouldn’t we focus on actually helping patients who are living with dementia right now rather than advocating for expensive high tech diagnostics that may lead to more harm than benefit?  (For more discussion, see Eric Widera's GeriPal post and this excellent commentary in the BMJ)

by: Ken Covinsky @geri_doc