Family Issues: Why Concern for Older Caregivers?WHY CONCERN FOR OLDER CAREGIVERS? Currently the total developmental disabilities population comprises about 5% of the general population while the 60 year old and over individuals with developmental disability about 0.5%. Although this is a small number, it will increase by threefold over the next 20 years to 1.5% of the general population, a three-fold increase. Because of the increasing numbers of older parent caregivers, the adult DD population is in crisis. Prior to 1970 children born with a developmental disability were not expected to grow old. Families were told not to expect to be caregivers all their lives. Beginning in the 1980’s many of these families began to realize that their adult child would grow older and, for the most part, require their care as they themselves age. Carers require an intensive effort toward lifelong responsibility for the daily safety, welfare and activities of their child. Over 25% of caregivers are age 60 or older and caring for an average age developmental disabled child of 38 years old. Usually this older carer is the mother who is responsible for the daily care and major decisions affecting the disabled adult. As the carer ages they will experience changes that may add stress in their lives leading to “burn out”. Both staff and caregivers should be aware of these changes and how the caregiver is affected, other wise the support that is provided by the lifelong older caregiver will collapse into a crisis. These include: a. Changes in family dynamics that lead to increased stress are: • Family - responsibility of the older care for a multi-generational family, • Role reversal - the older individual with disabilities caring for the aging parent(s), • Health issues -illness, death, or physical and/or mental exhaustion of an older caregiver or their spouse • Successor - problem of identifying sibling(s) or “key person” for succession planning, • Growing old - a significant portion of in-home supports provided by family caregivers are aging beyond their capacity to provide care over the next 10 to 20 years. b. The needs and concerns of lifelong caregivers of adults with Developmental Disabilities cannot be compared to those late in late life caring in the general aging network due to: • Complexity of the social (friends and leisure time), family relationships, household composition, career, and economic dynamics and problems the carers and family face that have ensured because of lifelong care giving. • Lifelong income dependency upon public funds that are unreliable or unpredictable. • The need to face the inevitable end of their lifeline care giving role. c. Changing focus of the caregiver as they reach the end of lifelong caring: •To maintain independence for the adult child with developmental disabilities after they are no longer able to care for them. •Not have the adult child drawn into the disability system for fear of institutionalization. •Defined future needs for the adult child on their own terms. •Ask for help for self and adult child only when they feel it is needed. •Help defined on their own terms •Help for self – then help for son or daughter d. Changing focus of the older care-giving parent and of their adult child as carer approaches end of their lifelong caring Focus of older carer parents versus focus of adult child with DD • Co-dependence of adult child versus their security • Succession management versus their self-determined home • Keeping it together versus their freedom to make decisions • Financial issues versus possible mates and/or spouse • Own health versus their financial assurance e. Transitioning of focus from younger carer (<70) to an older carer (>70)
Primary focus of carer changes from son/daughter to their own needs including financial, health, social, and housing.
• Not having enough time for themselves • Social lives having suffered • Feeling isolated and alone • Feeling loss of control over their lives • Having difficulties with planning ahead
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