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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

This Post Has 3 Comments

  1. Great article …Thanks for your great information, the contents are quiet interesting. I will be waiting for your next post.

  2. Hi Garipal,

    I am a fellow caregiver and just came across your blog – sorry to see you are in the same position, but if you are anything like me I hope your website provides some sort of outlet…

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

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