Jeanette A. Auger - Losing Me, While Losing You: Caregivers Share Their Experiences of Supporting Friends and Family with Dementia

A lzheimers disease and other related dementias have rightly gained importance in the academic milieu as well as our day-to-day society. In Nova Scotia alone, it is estimated that nineteen thousand people develop dementia every year. Losing Me While Losing You is an insightful entry into the lives of the people who care for persons with dementia. Caregivers have often been called the backbone of our health care system, supporting those who need assistance.

In Canada, 80 percent of the support provided to older people in need of assistance comes from family and friends. The care provided to persons living with dementia by their family and friends enables them to live far longer in the community than would be possible. Even when care needs become so great that nursing home admission is needed, family continue to provide essential emotional and physical support and contribute to their quality of life. The knowledge gained through interviewing caregivers is critical to help improve support for both the caregivers and the persons with a dementia diagnosis.

The organization of this book follows the stages of the journey as seen through the eyes of the caregivers: Noticin g, Responding, Assistance and Support, and Observations and Recommendations. Chapter 6 is a compendium of resources and supports available to caregivers. There are many strengths to the content one is diversity of the caregivers interviewed. They represent different ethnic and cultural experiences, and they have a variety of living arrangements, geographies, education and relationships with the person they are caring for be they wives and husbands, mothers and fathers, from large families or small.

Not so long ago, it was taboo to speak about our experiences of dementia the noticing stage that the authors bring to life through the words of the caregivers help us to identify the multiple ways in which the disease is first manifest. In the recent past we would have been in denial of the disease, afraid that by speaking about it we will it to happen or somehow it is the fault of the person with dementia. Indeed, some groups may still be in denial because of fear, because they feel that nothing can be done to turn the tide of dementia progression. Nothing could be further from the truth. Some types of dementia can be stabilized through medication. For others, the knowledge of cognitive impairment provides an opportunity for family and the person with the diagnosis to discuss future plans and preferences. Rather than hide behind closed doors, the thirty-five caregivers in this book offer insights into the process of noticing, how they responded and their encounters, good and bad, of seeking assistance and support.

The wealth of information on support and resources throughout the book will be beneficial to anyone who is currently a caregiver or is studying how to support people with dementia and their caregivers. Caregivers provide insightful recommendations on lessons learned, coping strategies and what government can do to best support caregivers. The positive personal growth caregivers experienced through their journeys is another valuable lesson from the book one that is often overlooked in research literature.

From the personal to the societal response, the authors descriptions of the caregivers experiences reveal a patchwork of programs and services in Nova Scotia. This is in contrast to the long history of national dementia strategies across the globe and across the provinces within Canada. The chapter on resources is comprehensive in its examination of leading-edge initiatives such as dementia villages, dementia-friendly communities, memory care facilities, geriatric clinics and a host of other initiatives. It also tackles the under-recognized topics of the impact of race and ethnicity on dementia care. Understanding the intent and scope of these resources is essential for anyone working in this field.