The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Housing

Throughout the aging process it is necessary to periodically assess the living environment to identify and make adjustments that will help maintain good health, independence, privacy and dignity while ensuring safety. Take into consideration all aspects of needs: medical, physical, social, emotional and personal safety. Are they being adequately met in the current living arrangement? 

Incorporate the preferences of the individual with Down syndrome, with attention to safety and quality of life. Look for living environments that support “aging in place,” meaning that they can accommodate physical and functional changes that may be encountered with aging. For adults with Alzheimer’s disease, plan ahead for an environment that can support increasing needs over the span of the disease. A calm, predictable, familiar environment can foster a sense of security for individuals experiencing memory changes. 

Considerations When Residing in the Family Home

When aging adults with Down syndrome remain at home, parents may find themselves in their 70s, 80s or 90s and still functioning in a hands-on primary caregiver role. Sometimes this role shifts to other family members: siblings, cousins, etc. When an individual lives at home into adulthood, it is important that the family think proactively about future plans. 

Keep in mind that aging is a dynamic process. Things are always changing, for both the parents, siblings and other family members, as well as for the individual being cared for. Make an effort to be proactive, thinking ahead to anticipate needs and concerns.

  • Develop a plan that may avoid a potential crisis situation created by illness, disease progression, incapacitation or death. Make a plan that can be sustainable for the lifespan. Dependence on one family caregiver can be tremendously stressful and unrealistic over the course of many years. 
  • Explore and, where possible, define roles of siblings or extended family members. Recruit necessary support for the family member(s) who assume the bulk of the responsibility for coordination of care and advocacy. Anticipate change with aging, and initiate a dialogue about family roles in future care planning.

Considerations When Residing in a Group Home

Advocates, whether family, friends or guardians, can play an important role in this setting, especially if the individual is unable to communicate his or her needs. The following considerations may improve both quality of life and quality of care of an individual aging within a group home setting:

  • Inquire about homes experienced in caring for adults with Down syndrome throughout the lifespan. 
  • Talk about the impact the aging process has on the individual and peers, with an eye toward quality of life for all. 
  • Be proactive and look for options that allow individuals to age in place. Such settings provide modifications in the physical environment and caregiving structure to adapt to the needs that emerge as the person ages

Transitioning into a New Living Arrangement

Changes in living arrangement are increasingly common throughout adulthood, particularly in later life. This change may be related to safety concerns, changes in the family, staff limitations, peer issues or lack of continuous care with the same provider. In the event that a change in living arrangements is required, it will be important to consider the following:

  • Consider the physical, social, emotional and medical needs of the individual. Look for a living situation that allows for opportunities for a continued active lifestyle and proximity to extended family and friends. 
  • Define what factors would help contribute to a “smooth transition,” while acknowledging certain challenges that will be part of any major life change. Be proactive. Remember, it is often easier for individuals to adjust to change when they are comfortable, and not overwhelmed by circumstances or in the midst of a major loss or family crisis. When moving out of the family home, acknowledge how emotionally difficult this transition may be for parents as “lifetime caregivers.” 

 


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BOOKS

  • Buddy Walk
  • NDSS Yourway
  • My Great Story