Tips from: Physical Therapist | Occupational Therapist | Social Worker

• General Approach to Managing the Individual with Dementia
  1. Optimize function and quality of life and capitalize on remaining strengths
  2. Address specific causes of impaired function and cognition, and triggers of behavioral symptoms
  3. Manage functional deficits
  4. Address psychosocial issues
  5. Address socially unacceptable/disruptive behavioral symptoms
  6. Address related ethical issues
  7. Manage related complications, other existing conditions, or adverse reactions to treatments
  
  
• Objectives for the management of progressive dementia
  1. Preserving function, including physical, social, and self care skills for as long as possible
  2. Accessing preserved long-term memory for enjoyment and validation
  3. Maintaining patients in the security and familiarity of their own homes for as long as possible
  4. Appropriately and actively using psychotropic medications and behavioral management techniques
  5. Discussing the patient's preferences for resuscitation and high-technology maintenance while still cognitively able
  6. Appointing a health care proxy or writing advanced directives while still able (and completing a will and doing estate planning)
  7. Carefully planning all relocations, whether temporary long-term
  
  
• Family support
  • Behaviors associated with dementia, such as delusions, agitation, sundowning, and wandering, create caregiving challenges for family members with little or no training in behavior management and coping.
  • Prudent medication regimens can address many behavior problems but must be monitored diligently. Caregivers need education about observing for untoward effects and the importance of reporting them.
  • As much as 80% of all care to the elderly is given in the home by family members. The challenges increase dramatically as the disease progresses. Tips for Caregivers: http://www.alzheimers.org/caregiving/index.htm#familycare
  • Only 28% of caregivers believe they have received thorough and helpful information from their doctors. It is important for the caregivers to receive counseling and support for themselves as well. In fact, according to one study, when caregivers took part in support programs, institutionalization of the patient was delayed by a year. Refer them. The Alzheimer's Association Chapter nearest the family is a good start. It will provide important support and other services.
  • Researchers have found over time that the caregiving burden on family members increases significantly as the cognitive impairment worsens.
  • Family caregivers often neglect their own well-being during the demanding years of caregiving. Sleeplessness, fatigue, anxiety, depression, and physical ailments go unrecognized and untreated. Risks of hypertension, stroke, cardiovascular events, and undetected cancers are high for caregivers. They need to be seen as patients as well as the individual with dementia. Caregivers are often called the "secondary victims" of dementia.
    http://www.nihseniorhealth.gov
  • A point comes when the most devoted caregiver will probably need to institutionalize the Alzheimer's patient. That point is determined not only by the caregiver's emotional endurance, but also by his or her physical strength and stamina, as an Alzheimer's adult typically takes on the random, undisciplined behavior of a very young child. http://www.mrltc.com
  • Financial considerations in finding a nursing home are often paramount, but the kind of care is equally important. Although fully half of all nursing home patients are victims of Alzheimer's, not all nursing homes have programs specifically designed for them.
    http://web.pdx.edu/~psu01435/aging.html
  
  
• Understand terminal stage signs and symptoms
  • Limited vocabulary (six words or less)
  • Bowel and urinary incontinence
  • Absence of smile
  • Inability to walk without substantial assistance
  • Inability to sit up independently
  • Difficulty eating or swallowing
  • Recent decline with ongoing weight loss
  • Decreased consciousness or coma
  • Recurrent infections (urinary, pulmonary)
  • Inability to hold up head or track with the eyes
  
  
• Address end of life issues proactively
  • The progressive, degenerative nature of Alzheimer Disease raises unique issues related to care at the end of life.
  • People who are affected by Alzheimer Disease usually die from complications of the disease, such as pneumonia.
  • Without an advance directive executed while the individual was competent, a substitute decision maker makes difficult life and death decisions.
  • End-of-life care choices may include the use, limitation, withdrawal or refusal of:
    • procedures, treatments or technology such as tube feeding
    • mechanical respirators or ventilators
    • cardiopulmonary resuscitation (CPR)
    • surgery
    • the use of antibiotics
  • Respect for the person's expressed wishes and interests should guide all end-of-life care decisions. The goal of care should be to provide comfort and dignity to the person, towards achieving what the person considers a good death.
  • A hospice program, if it is available, offers a more humane and compassionate option than the nursing home or hospital during the final months of a terminal illness.