Alzheimer's%20disease%20-and-%20dementia Patient Education

Patient and Caregiver

• Good communication needs to be established between clinician, patient and family
• If intensive long-term education and support services are provided to the caregivers, it may delay time to nursing home placement
• Educate the patient and caregivers about the illness and available treatments
  • Address concerns about behavioral symptoms which may be associated with loss of social status, dignity and the need for increased caregiver support
  • Reassure that these are part of the illness and due to direct damage to the brain and are usually controllable with treatment
  • Emphasize the importance of continuous treatment for dementia and routine follow-up for evaluation
• Teach the patient, family and other caregivers to recognize symptoms and to anticipate future manifestations
• May be helpful to educate the caregivers concerning the basic principles of care
  • Keep requests relatively simple; avoid giving the patient complex tasks which may lead to frustration
  • Avoid confrontation and defer requests if patient becomes angered
  • Remain calm, firm and supportive
  • Be consistent and avoid unnecessary change
  • Provide frequent reminders, explanations and orientation cues
  • Recognize decline in capacity and adjust expectations
  • Seek professional attention during sudden decline in function or emergence of new symptoms

Healthcare Workers

• Education of the nursing home staff may reduce the use of physical restraints and unnecessary antipsychotics

Caregiver Support

Reduces risk of substandard care, neglect or abuse

• Refer caregivers to support group networks, if available
• Respite care (eg visiting nurses, day care programs, brief nursing home stays, etc), if available, should be utilized to provide periods of rest for the caregivers from responsibilities
  • Allows caregivers to continue to work or fulfill other responsibilities
  • Helps the caregivers to relieve stress and mood disturbance associated with long-term care
• Psychoeducational workshops may be useful for caregivers to help cope with frustration or mood disturbance

Assist with Financial and Legal Issues

• Patients with dementia often lose their ability to make medical, legal and financial decisions as the disorder progresses
  • If arrangements are made while patient is still able to participate, caregivers can seek the patient’s guidance regarding long-term plans
• Patients may wish to pass authority for legal and financial decision-making to a trusted family member/friend
  • This will help avoid difficulty and expense of petitioning the court for guardianship or conservatorship later
• Discuss preference about medical treatment (eg nursing home placement, artificial life support, etc) during early part of illness so that patient may make known their wishes
• Educate the patient/caregivers about the importance of financial planning for future treatment and nursing care
• Advise patients to complete or update their wills, establish appropriate trusts and transfer of assets during early part of illness when mental competence for decision making is still maintained