November 20, 2013

By Christopher G. Kelly, MEd

Recognizing National Alzheimer’s Disease Awareness Month

As we approach Alzheimer’s Disease Awareness Month and National Family Caregivers Month in November, I am reminded of the following statement made by a family caregiver I was talking to a few weeks back.

“I feel like I have been hearing about ‘plaques’ and ‘tangles’ for 15 years.  Isn’t there anything new that would generate hope and excitement for people living with this horrible disease? All you hear is the negative. You can’t help but develop a sense of helplessness.  Helplessness can be paralyzing.”

This is a sentiment that many people living and working with AD can related to. After reviewing numerous journals, advocacy sites and social media portals, it WAS very difficult to find positive, hopeful information about Alzheimer’s Disease. However, there are a number of recent publications that should provide hope and direction. The problem may be that clients and family caregivers have to work too hard to find and read these robust reports.  So, I thought it would be helpful to highlight both the current challenges AND the positive side of Alzheimer’s care, support and treatment.

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We Have a Plan

In June, 2013 the US Department of Health and Human Services released an update to the “National Plan to Address Alzheimer’s Disease”  – a 65-page report highlighting the following key challenges and priorities. I wonder how many people are aware of the National Plan and how they can play a role?  See below for key challenges and goals outlined in this important publication.

Key National Plan Challenges

  •     “While research on AD has made steady progress, there are no pharmacological or other interventions to definitively prevent, treat, or cure the disease.”
  •     “While HHS and other groups have taken steps to develop quality measures to assess Alzheimer’s care and to improve the training of the health and long-term care workforce, there is room for improvement.”
  •     “Family members and other informal caregivers, who take on the responsibility of caring for a loved one with AD, need support. The majority of people with AD live in the community, where their families provide most of their care. The toll of caregiving can have major implications for caregivers and families as well as population health, with about one-third of caregivers reporting symptoms of depression.”
  •     “Stigmas and misconceptions associated with AD are widespread and profoundly impact the care provided to and the isolation felt by people with AD and their families.”
  •     “Public and private sector progress is significant but should be coordinated and tracked. In addition, data to track the incidence, prevalence, trajectory and costs of AD are limited.”

Key National Plan Goals

  •     “Prevent and Effectively Treat Alzheimer’s Disease by 2025”
  •     “Enhance Care Quality and Efficiency”
  •     “Expand Supports for People with Alzheimer’s Disease and Their Families”
  •     “Enhance Public Awareness and Engagement”
  •     “Track Progress and Drive Improvement”

This publication goes on to provide very detailed strategies for overcoming challenges and reaching the goals stated above. However, I wonder if these strategies could be made more concise and actionable for clients/family caregivers who are living with AD and the healthcare providers who support them.

National Alzheimer’s Association Raises The Voice of Those Living with AD

After thinking more about the concept of “helplessness,” I thought back to my amazing time working as a volunteer and associate for my local Alzheimer’s Association chapter.  This is where I witnessed small victories and courage every day through my work with clients and family caregivers. The Alzheimer’s Association National Office recently published a very engaging and informative report entitled, “Alzheimer’s from the frontlines: challenges a national Alzheimer’s plan must address.”  This 48-page report  outlines critical challenges based on survey findings from 43,000 people living with Alzheimer’s Disease in the US.  Core challenges included:

  •     A lack of public awareness
  •     Insufficient research funding
  •     Difficulties with diagnosis
  •     Poor dementia care
  •     Inadequate treatments
  •     Specific challenges facing diverse communities
  •     Specific challenges facing those with younger-onset Alzheimer’s
  •     Unprepared caregivers
  •     Ill-equipped communities
  •     Mounting costs

The Alzheimer’s Association goes on to identify “an agenda to overcome Alzheimer’s Disease” that ties directly to these challenges.

The Alzheimer’s Association website also encourages us to “get involved.”  I really like this webpage because it does give clients, family caregivers and providers clear action steps to take.

Hope TODAY Through Non-Medical Treatment and Cognitive Training

“The results of this review indicate that non-pharmacological therapies can make both a realistic and affordable contribution to the improvement and provision of care for people with Alzheimer’s Disease and related dementias and their caregivers.” Javier Olazarán – Neurologist/Researcher

As noted earlier in this blog, there are no current treatments that prevent or cure AD.  This message really impacts hope for those living with AD today.  I was personally frustrated and set back when researchers started to assert in 2010 that amyloid plaques (long considered the focus of treatment) “may not be the culprit”.  [ ; ].  So, I decided to review peer-review journal articles in search of any positive treatment outcomes.

I stumbled on a great article by Javier Olazaran et al (2010) entitled, “Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy.” This is one of the few articles I found that presented an unbiased, comprehensive review of non-medical approaches for AD.  See below for a summary of benefits.

Clients with AD had improved:

  •     Memory and cognition
  •     Ability to complete activities of daily living
  •     Behavior
  •     Mood
  •     Overall quality of life
  •     Restraint prevention

Family caregivers had improved:

  •     Mood
  •     Psychosocial well-being
  •     Overall health

As a former recreational therapist and support group facilitator, I saw the benefits of non-medical treatments firsthand. Sadly, there is very little attention given to non-pharma treatment approaches for clients and caregivers living with AD. It is also very difficult to access and pay for these treatment options in the home/community setting.  I think that this needs to change. 

The chart below provides an overall summary of non-medical treatment approaches that have been proven to improve symptoms and quality of life for clients and family caregivers.

Non-Medical Treatments Approaches for Common Challenges with AD

For cognitive symptoms and memory loss:

  •     Cognitive training
  •     Reminiscence
  •     Physical activity/Staying active
  •     Support groups
  •     Writing/Journaling
  •     Scrapbooking
  •     Yoga/Tai Chi/Meditation
  •     Combining all of the above
  •     Non-medical home care
  •     Adult Day Care
  •     Memory care unit

For activities of daily living (ADLs):

  •     ADL Training
  •     Guided performance with verbal prompts
  •     Physical activity/Staying active
  •     Yoga/Tai Chi
  •     Non-medical home care
  •     Memory care unit

For challenging behavioral symptoms:

  •     Cognitive stimulation/training
  •     Meaningful diversion
  •     Validation therapy
  •     Personalized music
  •     Support
  •     Meditation/Yoga/Tai Chi
    •         Professional training. Topics should include:
    •         Understanding AD
    •         Empathy
    •         Effective communication
    •         Symptom management
    •         Avoiding restraints
  •     Non-medical Home Care
  •     Adult Day Care
  •     Memory care unit

For mood-related symptoms:

  •     Cognitive stimulation group sessions
  •     Cognitive Behavioral Therapy (CBT)
  •     Education
  •     Advocacy
  •     Creative expression
  •     Personalized music
  •     Meditation/Yoga/Tai Chi
  •     Physical activity
  •     Support

Non-Medical Treatments For Family Caregivers:

  •     In-home counseling sessions
  •     Ongoing telephone support/coordination
  •     Online connection with peers/HCPs
    •         Education
    •         Coping skills
    •         Problem solving
  •     Cognitive behavioral therapy (CBT)
  •     Support groups (with and without client)

It is important to note that the non-medical approaches stated above do not cure AD.  However, these approaches do improve functioning, mood and overall quality of life for both clients and family caregivers.  It is also important to note that medicine can play an important role in treating the symptoms of AD. So, it would follow that the most effective approach combines medicine with non-medical approaches.

So, why are we not hearing more about non-medical approaches for AD? There are many knowledge leaders who do not believe that enough research has been done on these approaches, and that the quality of current/past research has been poor.  I would argue that we can say the same about current FDA approved medicines for Alzheimer’s Disease, as well as medical treatments that are moving through the clinical trial process today. There are also knowledge leaders who feel that proven approaches such as cognitive rehabilitation are futile with AD, because the condition progressively gets worse.  As a health educator, I feel we should offer any and all treatments that improve symptoms and quality of life in the moment regardless of prognosis. When advocating for non-medical treatment approaches for AD, the Roslyn Carter Institute for Caregiving notes, “to not make them widely available… is shortsighted and a violation of the best principles of public health.”

In addition, the UK government NICE guidelines on dementia state the following…

“People with mild / moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation program. This should be commissioned and provided by a range of health and social care workers with training and supervision. This should be delivered irrespective of any anti-dementia drug received by the person with dementia.”