Families of Adults with Down Syndrome (Down Syndrome Issues & Information)

An increasing number of adults with Down syndrome live in our communities. These adults usually have families who are involved with them in a range of ways. Many parents continue to share their home with their adult child and in cases where the individual does not live with family there generally remains a high level of contact and engagement. Many changes occur in the lives of adults with Down syndrome as they age and these changes have an impact on the family members who care for them. It is important to recognise that as the individual with Down syndrome ages, so too, do his/her family members. This book deals with the issues that face families as their members grow older and the consequent adjustments that families make as they adapt to the changes in the individuals who comprise their family. We have tried to identify issues relevant to family members, rather than those relevant to the adult with Down syndrome, although sometimes there is substantial overlap. We have identified aspects of family life that need consideration and summarised the available research evidence; however, some topics have been relativle neglected by researchers. This book reflects the authors' understanding that families recognise positive outcomes from having their son/daughter/brother/sister as a member of their family and adopts a quality of life perspective to the material presented. The importance of the quality of life approach is that it ensures that those aspects of life that are functioning well, and from which families get enjoyment, purpose and a sense of competence, are not ignored in favour of those in which difficulties are being encountered. This is not to deny that there may be challenging aspects to having an adult family member with Down syndrome. The book raises a number of the issues that families may need to consider as they face changing demands over the life courses of their individual members and of the family as a unit. Even desired and positive changes are stressful and families with an adult with Down syndrome may also experience changes that they perceive to be negative for their family. Some of the material in this book is aimed at assisting families to find ways to manage these strains and to minimise their impact on family life. Different approaches to family life and its challenges will be effective for different families, however consideration of and preparation for predictable demands should help all families to maintain equilibrium.