Skip to main content

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

Comments

James Murray said…
Great article ...Thanks for your great information, the contents are quiet interesting. I will be waiting for your next post.
Anonymous said…
I agree with this as with the help of caregivers only it is possible to take proper care of the elders and needy people.
Home Healthcare Agency Seminole FL
Anonymous said…
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

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

Survival from severe sepsis: The infection is cured but all is not well

Severe sepsis is a syndrome marked by a severe infection that results in the failure of at least one major organ system: For example, pneumonia complicated by kidney failure. It is the most common non-cardiac cause of critical illness and is associated with a high mortality rate.

But what happens to those who survive their hospitalization for severe sepsis? An important study published in JAMA from Iwashyna and colleagues provides answers and tells us all is not well. When the patient leaves the hospital, the infection may be cured, but the patient and family will need to contend with a host of major new functional and cognitive deficits.

Iwashyna examined disability and cognitive outcomes among 516 survivors of severe sepsis. These subjects were Medicare enrollees who were participants in the Health and Retirement Study. The average age of patients was 77 years.

When interviewed after discharge, most survivors were left with major new deficits in their ability to live independently. …