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.
Persons with Alzheimer’s disease...
Disease Centers (ADC's)...
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.