the caregiver journey

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The Caregiver Journey. When one is sick, two need help. The Caregiver Journey. TODAYS FAMILY CAREGIVERS. Provide 80% of all long term care Include 52 million caring for adults 29.2 million help ill or disabled adults aged 18+ with activities of daily living - PowerPoint PPT Presentation


  • The Caregiver JourneyWhen one is sick, two need help

  • The Caregiver JourneyProvide 80% of all long term careInclude 52 million caring for adults29.2 million help ill or disabled adults aged 18+ with activities of daily living 8.9 million care for someone aged 50+ with dementiaWill increase by 85% by the year 2050


  • The Caregiver JourneyMedical advancesShorter hospital staysLimited discharge planningFrom the hospital to the home...

  • The Caregiver JourneyFamily caregivers provide $350 billion dollars of care a year for freePaid home healthcare -- $32 billion Nursing home services -- $92 billionCare for Alzheimers patients costs families approximately $23,436

    The cost of care...

  • The Caregiver JourneyHigher mortality rateDepression affects 30-59% of family caregiversIncreased risk for chronic conditions such as coronary heart disease, cancer, and diabetes

    The physical and emotional toll on caregivers...

  • The Caregiver JourneyAcute Illness


    Chronic IllnessWhen Illness and/or Disability Strike...

  • The Caregiver JourneyShock


    Emotional Overdrive

    Life is put on hold to deal with crisis

    Impact of the Initial Diagnosis The Acute Emotions

  • The Caregiver JourneySadness, grief, depressionDreadAnger, anxietyGuiltLoneliness, isolationImpact of the Initial Diagnosis The Chronic Emotions

  • The Caregiver JourneyThe Heroic Stage

    The Ambivalence Stage

    The New NormalThree Stages

    The value of this unpaid labor force of family caregivers in 2000 was estimated to be at least $257 billion annually,nearly double the combined costs of home health care ($32 billion) and nursing home care ($92 billion) a significant increase from 1997 estimates which rang in at approximately $196 billion. Caregiving families rarely receive payment for their services and often find themselves in an increasingly difficult financial state as a result of their caregiving.

    There are various statistics analyzing the number of family caregivers across the United States based on diverse criteria. Some criteria used can range from long distance caregiving, caregiving of those who are in nursing homes, age of recipient and caregiver, disease/disability, relationship to care recipient, degree of care needed, gender, and ethnicity.

    The statistics cited in this workshop will be referring to informal/and or family caregivers who provide unpaid care to a family member, a friend, or a neighbor. Caregiving can be provided on a part time basis to full time. The caregiver can live with the recipient or live apart.

    The term caregiver refers to anyone who provides care for someone who is in some degree unable to care for themselves. The degree of care can range from simply overseeing financial issues and helping with decision making to assistance on a daily basis for all activities of daily living.

    Family caregivers provide 80% of all long term care. Estimates indicate there are 52 million family caregivers who provide unpaid care for an adult facing chronic illness/disability:

    The figure of $350 billion dollars is for the year 2006. Other figures are for 2005 or earlier.

    Caring for a loved one with a chronic or disabling condition is one of the most prominent issues challenging American families. Most patients prefer to remain at home rather than a hospital or nursing facility while dealing with chronic illness or disability. Caregiving can place a heavy toll on those who provide care. Stress, anxiety, and burden are hallmark emotions of family and informal caregiving resulting in profound depression which deserves special attention.Acute Illness: Occurs suddenly (i.e. heart attack; stroke) and is typically of short duration (less than a year) Outcome is variable depending on the severity of the illness-either patient is cured or they can die abruptly. Acute illness can become chronic. However, medical intervention is typically aimed more towards a cure and often times patients can and do recover.

    Accidents: Also occurs suddenly and without warning. Variable outcomes ranging from minor short term disability to long term and severe/and or chronic disability.

    Chronic illness: Can sometimes be defined by the length of the illness, the reoccurrence, the severity, and the resistance to a cure. Chronic illness can occur over time and may reveal itself slowly. Chronic illness does not always kill. Instead such illness can create poor health, disability, cognition issues, and can reduce the quality of life for the patient and their family. Often times there is no cure for chronic illness, it is difficult to treat, and can last a lifetime.

    The Acute Emotions: Emotions flow over you in rapid succession. Initially you are stunned at the news that your loved one has been diagnosed with a life altering illness or has become profoundly disabled- physically/and or cognitively. Some may experience such profound shock that they move into denial and try to minimize the seriousness of their loved ones condition as a means to cope with their overpowering emotions.

    Once the serious nature of your loved ones condition begins to set in you move into emotional overdrive with fear and panic being the hallmark emotions beginning to emerge. You quickly move into action and determined the immediate goal is to save your loved ones life.

    You put your life on hold in an effort to support your loved one through their illness. Typically acute emotions deliver high energy actions to see you through the initial phase of illness. However, they do not last and people start to experience chronic emotions.The Chronic Emotions:As time marches on some family caregivers will move through the acute emotions of illness into the chronic phase more quickly than others given their age and circumstances surrounding the initial crisis. Caregivers often experience sadness, grief, depression, dread, anger, anxiety, guilt, loneliness, and isolation as the illness becomes chronic and of a long duration.To neglect our own well-being is to risk burn-out and then we neither serve our partners or ourselves very well.

    In her inspirational book, Mainstay, Maggie Strong suggested there are three stages which typified a caregivers life. The caregiver journey can serve as a powerful metaphor for how we can re-enter our lives and reclaim our authentic self..