18: Early Stages: Family Involvement & Planning

This program will present:

  • An overview of the changes associated with Alzheimer’s disease
  • Strategies for family involvement and care
  • Information about care planning
  • There are no easy answers when it comes to the care of another
  • Our hope is to offer you useful information and guidelines for caring for someone with dementia
  • These guidelines will need to be adjusted to suit your own individual needs
  • Progressive dementia
  • Later years of life
  • Changes in brain
    • Chemistry
    • Structure
    • Processing
  • Loss of brain cells and pathways
  • Hippocampus damage affects new information processing and storage
  • Results are changes in behavior and functioning

Changes in Behavior & Personality

  • Suspiciousness
  • Paranoia and negativity
  • Restlessness/wandering
  • Rummaging
  • Depression
  • Aggression
  • Catastrophic reactions
  • Agitation
  • Verbal abuse
  • Combativeness
  • Apathy and depression
  • Caregiver stress
  • Anxiety
  • Depression
  • Sleep disruption
  • Care recipient abuse
  • Delusions
    • Strongly held ideas or beliefs that have no basis in reality
  • Illusions
    • Misperceptions or misinterpretations of real objects
  • Hallucinations
    • Perceptions of things that are not there
  • Forgetting things
  • Neglecting hygiene
  • Dressing and grooming poorly
  • Communication difficulties
  • Amnesia
    • Loss of memory
  • Aphasia
    • Inability to speak or understand language
  • Agnosia
    • Inability to recognition people, objects and places
  • Apraxia
    • Inability to perform routine, over-learned activities
  • Changes occur in stages over many years
  • Early, middle, late and end-stage

Early stages

  • Forgetful
  • Suspicious, obsessed
  • Restless, apathetic
  • Sleep changes may begin
  • Aware, concern

Middle stages

  • Difficulty functioning at home and at work
  • Personality changes and difficult behaviors
  • Sleep pattern changes more common

Late stages

  • Greater difficulty with activities of daily living
  • Reduced mobility
  • More difficult behaviors
  • Worsening of sleep pattern disturbances


  • Unable to walk
  • Unable to recognize familiar people
  • Weight loss
  • Incontinence
  • Needs complete care
  • May have moments of lucidity
  • Inform and involve all family members
  • Obtain information about the disease
  • Locate and investigate resources available
  • Educational materials are available regarding
    • Dementia
    • Prognosis & projected course
    • Principles of care
    • Resources
  • No longer the person they knew
  • Caregiver stress
  • Care planning
  • Providing care
  • Caregiving also an opportunity to contribute in the care and support family solidarity
  • Collectively monitor symptoms
  • Distance caregiving
    • Inform and consult distant relations
    • Telephone visits
    • Occasional on-site visits
  • Information resources
  • Alternative Care
  • In-Home assistance
  • Day care
  • Residential care
  • Hospice care
  • Safe Return® program
  • www.LightBridgeHealthcare.com
  • On-line information and education
  • Educational materials to purchase
  • “Ask Dr.Mindy” interactive site
  • Links to other resources
  • Home care is preferred but not always possible
  • Learn about other care services
  • Continuum of care
  • When a person’s condition improves with treatment
  • When a person’s condition declines with progression of a disease

What is the best solution for Mary and Robert in this situation?

  • A. Enroll Robert in an adult day care program for 2 to 5 days a week.
  • B. Get home care assistance.
  • C. Continue caregiving by herself.

Choice A: Enroll Robert in an adult day care program for 2 to 5 days a week, is a good answer.

Choice B: Get home care assistance, is also a good choice.

  • Cooking
  • House cleaning
  • Companionship
  • Transport to appointments

Choice C: Continue caregiving by herself, is not a good choice.

  • Plan early
  • Involve family in planning
  • Transition
  • Caregivers need to care for themselves, involve other family members, accept help, and plan for long-term needs.
  • Meals on Wheels
  • Congregate Meals
  • Senior Companions
  • Respite care
  • Support groups
  • Volunteers
  • Respite Care Services
    • Volunteers
    • Paid services
  • For the caregiver
  • For the individual with dementia

24/7 Helpline: 1.800.272.3900 www.alz.org

Alzheimer’s Association Safe Return® Program

  • Nationwide identification, support and enrollment program that provides assistance when a person with dementia wanders and becomes lost
  • Assistance is available 24 hours a day, seven days a week
  • Activates a community support network
  • Informs local law enforcement

Click here to learn more about the Safe Return® Program.

  • Offer socialization and nutrition

To learn more about nutrition programs: Meals on Wheels: Website: www.Mowaa.org Tel: 703.548.5558 AoA info on congregate meals: Website: www.AoA.gov

  • National Senior Service Corps
  • Foster Grandparents
  • Senior Companions
  • Retired Senior Volunteers

Click here to learn more about Senior Companions

  • In the home, residential facility, hospital or hospice facility
  • Focuses on quality of life
  • Caring,not curing
  • Medicare/medicaidn reimbursement
  • Involve family in hands-on care and support of primary caregiver
  • Inform and educate all family members
  • Find out about available resources and services
  • Respite care services,nutrition programs such as Meals on Wheels, volunteer programs such as senior companions, support groups, the Alzheimer’s Association, and hospice care

Written by:
Catherine M. Harris, PhD, RNCS.
Mindy J. Kim-Miller, MD, PhD

Edited by:
Sasha Asdourian


17: Managing Difficult Behaviors

Select the best answers from the list of choices following each question.

Click here to open Certificate of Completion
  • Assisted Living Federation of America. (2008). Federal statutes that impact assisted living. Retrieved on February 10, 2009 from http://www.alfa.org/i4a/pages/Index/
  • Butcher HK, Holkup PA, Maas M, (2001). Thematic analysis of the experience of making a decision place a family member with Alzheimer’s disease. Res Nurs Health 24(6): 470-80.
  • Calkins MP & Namazi KH. (1991). Caregivers perceptions of the effectiveness of home modifications for community living adults with dementia. Journal of Alzheimer’s Care and Related Disorder Research, 6:1:25-29.
  • McClendon MJ, Smyth KA, Neundorfer MM, (2006). Long-term-care placement and survival of persons with Alzheimer’s disease. Journals of Gerontology Series B. 61B(4) p220-7.
  • Gaugler J, Leach C, Clay T, Newcomer R, (2004). Predictors of nursing home placement in African Americans with dementia. Journal American Geriatrics Society 52:445-452.
  • Gerdner LA, Hall GR, (2001).Chronic confusion. In ML Maas, KC Buckwalter, MD Hardy, T Tripp-Reimer, MG Titler, & JP Specht (Eds), Nursing care of older adults: Diagnoses, outcomes, & Interventions.(pp. 421-441). St. Louis. Mosby.
  • Home safety for people with Alzheimer’s disease. (2007). Alzheimer’s Disease Education and Referral. National Institute on Aging, NIH Publication.
  • McClendon MJ, Smyth KA, Neundorfer MM, (2006). Long-term-care placement and survival of persons with Alzheimer’s disease. Journals of Gerontology Series B. 61B(4) p220-7.
  • Schur D, Whitlach CJ, (2003). Circumstances leading to placement: A difficult caregiving decision. Lippencott’s Case Management 8 (5): 187-97.
  • Warner M & Warner E (1996). The caregiver’s guide to home modification. In M L Warner: The complete guide to Alzheimer’s proofing your home. Purdue University Press.
  • Wang S, Davies E, (2007). Journal of Nursing (China). Jun; 54(3): 82-86.