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Executive Summary

    Mrs. Brown is a seventy-nine year old African-American woman.  They have been happily married for over half a century, and they are proud of their two children and many grandchildren.  They were avid church-goers, and active community members until four or five years ago.  Mr. Brown was diagnosed with Alzheimer’s disease seven years ago.  Since then, he has slowly but steadily showed signs of cognitive deterioration.  First he had problems balancing the checkbook…then, his driving became more erratic and his reflexes seemed less acute…Mrs. Brown noticed some personality changes in her husband.  This man who never raised his voice and never spoke harshly to anyone now had a quick temper.  He was easily agitated by the simplest incidents – a light left on in the kitchen overnight, a misplaced watch – often things he caused himself, but didn’t remember.  And he “wandered.”  Mrs. Brown’s son had purchased the book, “The 36-Hour Day” for her in the first year after his father’s diagnosis.  Mrs. Brown had read through all 200 plus pages of the book, and felt she knew what to expect of the disease and how she should handle problems.  But she was ill-equipped to deal with his wandering.

            Night after night, Mr. Brown would rise from the bed and quietly walk down the hallway to the front door.  Unlocking the deadbolt and the chain, he would slip out of the house, leaving the door wide open behind him.  Mrs. Brown awoke that first night to find his side of the bed empty.  She ran out of the bedroom only to discover the front door thrown open.  Her fear was understandable – did someone break in?  Did they take her husband?  Mrs. Brown ran out into the yard, and thankfully, Mr. Brown was standing out there alone.  She rushed to him and grabbed his arm, demanding “What are you doing out here?!”  Mr. Brown shoved her hand away and looked as if he were going to strike her.  “Who are you?  Get away from me – my wife will be here any moment.”  Mrs. Brown exclaimed, “I AM your wife, and you need to get back inside!”  At that, she tried to move him, and he struck out at her with his fist.  Mrs. Brown was stunned.  She was hurt, anger, confused and heartbroken all at once.  No amount of reading could have prepared her for this.  There was a section in The 36-hour Day that dealt with “Aggression”, but she couldn’t remember what it said.  She couldn’t even think straight at the moment.  She had never experienced this before; and she knew the Alzheimer’s Association Helpline, which she often called for advice, was closed at this time of night.   

    Mrs. Brown is not alone.  Current estimates report as many as four million individuals are afflicted with Alzheimer’s disease (AD) in the United States alone.  The majority of these individuals are cared for in their homes, by their spouse or an adult child. Caregiving in this context often places the individual fulfilling the caregiving role at great risk for significantly stressful experiences.  Behavioral changes, similar to those experienced by Mr. Brown, are common; studies report as many as 70 to 80 percent of Alzheimer’s patients experience behavioral disturbances during the course of the disease (Lyketsos, 1999; Kunik et al, 1999).  These symptoms place Alzheimer patients at greater risk for institutionalization, due to the burden felt by their caregivers.

   Analysis of the primary and secondary stakeholders with regard to Alzheimer’s disease care and maintenance uncovered some important needs to be considered.  Additionally, it was found that stakeholders possessed a wealth of capacities on which to build.

Needs

Capacities

  • Reduce the behavioral disturbances exhibited by AD patients.

  • Provide caregivers with alternative options for learning how to deal with problem behaviors – currently the options largely consist of books or printed materials and video or audio tapes.

  • Caregivers need a way to access knowledge easily and at their own pace – without having to put aside a large amount of time to do so.

  • Caregivers need to access knowledge and support at the time of need, whether that time is 2 a.m. or 3:30 in the afternoon.  The time of greatest need may vary from person to person and day to day.  It may not always fall into normal “working hours.”

  • Caregivers need a way to build skills for caregiving, rather than merely accumulating information from various sources.

  • Caregivers need to have opportunities for experiential learning.

  • Caregivers need to have opportunities for experiential learning without risk to themselves or those persons being cared for.

  • The knowledge possessed by experienced caregivers should not be lost – knowledge should be captured for the benefit of future caregivers.

  • Information and knowledge possessed by major authorities in Alzheimer’s disease, such as the Alzheimer’s Association and Alzheimer’s Disease Centers, should be stored in such a way as to facilitate sharing of the knowledge with caregivers and other relevant stakeholders.

  • The captured knowledge should be utilized to develop training programs that help caregivers learn and apply caregiving skills.

Caregivers...

  • Are assumed to have strong relationships with their care recipients, given that the majority of caregivers are either spouses or adult children (FCA, 2001).  

  • Know very well the likes, dislikes, personality and behavioral traits of the patient.  

  • Provide care that has great value: it has been estimated that if the services that home-based caregivers provide were to be replaced with formal, professional services, the cost would reach approximately $196 billion (FCA, 2001).  

  • Report receiving intrinsic benefits from their caring role, thus acquiring a positive effect on well-being (Pearlin et al, 1990).  

  • Usually have the capacity to change or modify their reaction to situational factors, unlike the patient (Shanks, 1999). 

Persons with Alzheimer’s disease...

  • Demonstrate behaviors that are usually linked to the environmental interaction with the patient – and the environment is typically subject to change (Hamel et al, 1990). 

  • Do indeed have the ability to respond to positive environmental changes, leading ultimately to fewer behavioraldisturbances and better quality of life for patient and caregiver (Gruetzner,2000).

Extended family...

  • Possess capacity related to theirsheer numbers - withgreater numbers of extended family and friends, there is potential for more hours of patient care to be distributed to help relieve the primary caregiver.

Alzheimer's Disease Centers (ADC's)...

  • Possess vast amounts of knowledge acquired through their research and networking.  

  • Employ some of the most prominent researchers in the field of Alzheimer's disease (www.alzheimers.org/pubs/adcdir.html#about).

Alzheimer's Association...

  • Has contact with millions of people with AD and their caregivers nationally.  

  • Has networking connections with professionals, caregivers and persons with AD from around the world.  

  • Is the top private funder of research into the causes, treatments, prevention and cure of AD.  

  • Is recognized as an authority in AD information, education and support.

  • Has major advocacy strength, as demonstrated by the $466 million for AD research Congress designated as a result of the Association's advocacy efforts (www.alz.org/aboutus/respite.htm).

  • Is open to technological advances, as demonstrated by its current work on a "personalized knowledge service" that will link callers to a 24-hour, toll free hotline providing care consultation and referrals to services in the caller's area.  

 

   The following analysis and proposal addresses the challenges caregivers of Alzheimer patients face, especially with regard to dealing with problem behaviors.  A detailed analysis will show that despite many excellent print, audio and video resources to train caregivers, these methods do not necessarily translate into more effective caregiving outcomes.  Technology may hold the key to improving the quality of life for Alzheimer’s patients and their caregivers.  Currently, online chat/support groups and listserv applications operate as support networks and sources of immediate response to caregiver questions and concerns.  However, it is proposed that technology be taken a step further, with the integration of knowledge management systems (KMS) and even virtual reality simulation exercises to address the challenge of caregiver training.  These proposed solutions would address the needs uncovered in the initial assessment, and build upon the capacities of not only the primary stakeholders, but those who are secondary stakeholders as well.  Mrs. Brown, and hundreds of thousands of other caregivers would benefit from implementation of one or several of the proposed interventions.  It is an important topic to address…one in four people is affected by Alzheimer’s disease in some way.  Mr. Brown could easily be your father, or brother, or best friend, or you.