For more than 25 years, the Alzheimer’s Association® has been committed to advancing Alzheimer research and enhancing care, education and support for individuals affected by the disease. Building on our tradition of advocacy for improving the quality of life for people with dementia, we launched the Alzheimer’s Association Campaign for Quality Care in 2005. Approximately 70 percent of people with dementia or cognitive impairment are living at home. To better respond to their needs, we have joined with leaders in dementia care to develop the evidence-based Dementia Care Practice Recommendations for Professionals Working in a Home Setting. The home setting recommendations, in addition to those named below, are the foundation of the campaign. Each year we focus on a different set of care recommendations that can make a significant difference in an individual’s quality of life. Our Phase 1 recommendations focus on the basics of good dementia care, food and fluid consumption, pain management and social engagement. Phase 2 covers wandering, falls and physical restraints. Phase 3 covers end-of-life care practices and issues. And Phase 4 addresses all of these practices as they relate to the home setting. To date more than 30 leading health and senior care organizations have expressed support and acceptance for one or more phases of the Dementia Care Practice Recommendations. We are grateful to these organizations for their counsel during development of the recommendations and for helping to achieve consensus in our priority care areas.
Underlying the home care practice recommendations is a person- and family-centered approach to dementia care. This approach involves tailoring care to the abilities and changing needs of each person affected by the disease. It also respects the cultural values and traditions of each family and counts family members as part of the care team. The recommendations emphasize the importance of personalized care and relationship building. Providers are encouraged to learn about an individual’s cultural background, personal history, abilities, and care choices in order to make informed decisions and build rapport. They are also encouraged to build strong relationships with family members who are part of the care team and to understand the family’s choices concerning care. Providers who have good dementia training will be most effective in delivering personalized care. This manual is divided into eight main sections. Following a brief introduction and general description of dementia and its effects, the first section provides an overview of good home care. The Personal Care Guide that follows is at the heart of the manual. It defines dementia considerations, care goals and recommended practices related to a broad range of care topics. The recommended practices for each topic include guidelines for assessment, suggested provider approaches and, where applicable, tips for modifying the environment. Additional sections on personal autonomy, home safety and end-of-life care supplement the Personal Care Guide using the same approach. Sections on home care provider training, special topics and a glossary of terms complete the manual.
There are a variety of paid “providers” who care for people with dementia in their home. Paid home care providers can range from professionals (e.g. nurses and therapists) and paraprofessionals (e.g. personal care aides), to non-medical persons (e.g. homemakers and chore services workers) who deliver services to persons with dementia. These providers may function independently or as members of a care team. For the purpose of these practice recommendations, the focus is primarily on those providers who are part of a team, participate in care planning meetings and provide care determined by a formal care plan(s). In some cases, there is reference to a specific discipline or level of care provider such as direct care provider (including certified nursing assistants, home health aides and personal care assistants), professional practitioner (including nurses, social workers and rehabilitation therapists), or supervisor.
Throughout this document, the term “family caregiver” refers to any family member, partner, friend, or other significant person who provides or manages the care of someone who is ill, disabled or frail. There may be more than one family caregiver involved in a person’s care.