Dementia Care Practice Recommendations for Professionals ...

1 Alzheimer's Association Campaign for Quality care Dementia care Practice Recommendations for Professionals Working in a Home Setting Phase 4. Building consensus on quality care for people living with Dementia The Alzheimer's Association is the leading voluntary For more information, visit or contact: health organization in Alzheimer care , support and Elizabeth Gould, research. National Office Our mission is to eliminate Alzheimer's disease Alzheimer's Association through the advancement of research; to provide 225 N. Michigan Ave., Fl. 17. and enhance care and support for all affected; and to Chicago, IL 60601-7633. reduce the risk of Dementia through the promotion Phone: of brain health. The Alzheimer's Association offers quality care 2009 Alzheimer's Association.

2 All rights reserved. education programs for Professionals who work in This is an official publication of the Alzheimer's Association but may be nursing homes, assisted living residences and home distributed by unaffiliated organizations and individuals. Such distribution settings. For more information, call does not constitute an endorsement of these parties or their activities by the Alzheimer's Association. or visit Table of Contents I n t r o d u c t i o n 5 3 : S a f e t y a n d P e r s o n a l Au t o n o m y 40. D e m e n t i a a n d I t s E f f e c t s 7 Dementia Considerations 40. care Goals 41. 1: T h e B a s i c s o f G o o d H o m e C a r e 8. Recommended practices 41. Ten Warning Signs 8. Communication with Individuals and Family 10 4: Home Safet y 43.

3 Involvement of Family and Support Services 11 Dementia Considerations 43. Behaviors 12 care Goals 43. Decision-Making 15 Recommended practices 43. General Home care Planning and Provision 17 Home Environment 43. General Safety 43. 2: Personal care Guide 19. Fall and Accident Prevention 44. Social Relationships and Meaningful Interaction 19. Bathroom Safety 44. Dementia Considerations 19. Medication Safety 44. care Goals 19. Kitchen Safety 45. Recommended practices 19. Food Safety 45. Pain Management 22. Guns and Firearms 45. Dementia Considerations 22. 5 : E n d - o f - Li f e C a r e 46. care Goals 23. Dementia Considerations 46. Recommended practices 23. care Goals 46. Personal care 25. Recommended practices 46. Dementia Considerations 25. Communication with Individuals and Family 46.

4 care Goals 25. Assessment and care for Physical Symptoms 47. Recommended practices 25. Assessment and care for Behavioral Symptoms 49. Bathing 26. Emotional and Spiritual Support 49. Oral care 27. Family Participation in End-of-Life care 50. Dressing 27. Grooming 28 6 : H o m e C a r e P r ov i d e r T r a i n i n g 51. Toileting 28 7: Sp e c i a l T o pi c s 53. Eating and Drinking 29 Making the Most of a Home Visit 53. Dementia Considerations 29 Considerations for Those Who Live Alone 53. care Goals 30 Clinical Medication Management 54. Recommended practices 30 Transitions in care 55. Falls 32 Elder Abuse and Neglect 56. Dementia Considerations 32 Caregiver Stress 57. care Goals 33 Travel Outside of the Home 57. Recommended practices 33 Emergency Preparedness 58.

5 Wandering 36 Provider Self- care 59. Dementia Considerations 36 8: Glossary 61. care Goals 37. Recommended practices 37. 1. Campaign Overview For more than 25 years, the Alzheimer's S t r at e gi e s f o r Q ua l i t y C a r e Association has been committed to advancing All aspects of our Quality care Campaign from Alzheimer research and enhancing care , education the selection of priority care Practice areas to the and support for individuals affected by the disease. development of Recommendations , educational Building on our tradition of advocacy for improving programming and advocacy are based on the the quality of life for people with Dementia , we best available evidence on effective Dementia care . launched the Alzheimer's Association Campaign We are using four strategies to achieve the overall for Quality care in 2005.

6 Campaign goal: To encourage adoption of recommended practices Approximately 70 percent of people with in assisted living residences, nursing homes and Dementia or cognitive impairment are living at home settings, we advocate with Dementia care home. To better respond to their needs, we providers. have joined with leaders in Dementia care to develop the evidence-based Dementia care To ensure incorporation of the Practice recommen- Practice Recommendations for Professionals dations into quality assurance systems for nursing Working in a Home Setting. The home setting homes, assisted living residences and home Recommendations , in addition to those named settings, we work with federal and state below, are the foundation of the campaign. policymakers.

7 To encourage quality care among providers, we Each year we focus on a different set of care offer training and education programs to all levels Recommendations that can make a significant of care staff in assisted living residences, nursing difference in an individual's quality of life. homes and home settings. Our Phase 1 Recommendations focus on the basics To empower people with Dementia and family care - of good Dementia care , food and fluid consump- givers to make informed decisions, we developed tion, pain management and social engagement. the Alzheimer's Association CareFinder . This Phase 2 covers wandering, falls and physical interactive, online tool educates consumers about restraints. Phase 3 covers end-of-life care practices how to select care providers and services and how and issues.

8 And Phase 4 addresses all of these to advocate for quality care . 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 recommenda- tions and for helping to achieve consensus in our priority care areas. 2. Organizations Supporting the Dementia care Practice Recommendations , Phase 4. AARP Gerontological Advanced Practice Nurses American Academy of Home care Physicians Association American Academy of Hospice and Palliative Hospice and Palliative Nurses Association Medicine National Association for Home care and American Association of Homes and Services Hospice for the Aging National Association of Social Workers American Dietetic Association National Gerontological Nursing Association American Geriatrics Society National Hospice and Palliative care American Medical Directors Association Organization American Occupational Therapy Association National Private Duty Association American Physical Therapy Association PHI.

9 American Society of Consultant Pharmacists American Speech-Language-Hearing Catholic Health Association Association accepts the Recommendations Center for Health Improvement We are enlisting the support of these and other organizations, as well as consumers and policy- makers, to help us reach the goal of our Quality care Campaign to enhance the quality of life for people with Dementia by improving the quality of Dementia care in assisted living residences, nursing homes and home settings. 3. Phase 4. Introduction to Dementia care Practice Recommendations Phase 4. Edited by Elizabeth Gould, , Jane Tilly, Dr. , and Peter Reed, Dementia care Practice Recommendations Underlying the home care Practice recommenda- for Professionals Working in a Home Setting tions is a person- and family-centered approach is the latest in a series of Dementia care Practice to Dementia care .

10 This approach involves tailoring Recommendations offered by the Alzheimer's care to the abilities and changing needs of each Association. Three previously published manuals person affected by the disease. It also respects (Phases 1, 2 and 3) provide Recommendations the cultural values and traditions of each family and for care in nursing homes and assisted living counts family members as part of the care team. residences. The Recommendations emphasize the importance This manual offers best Practice Recommendations of personalized care and relationship building. for Professionals providing care in a home setting. Providers are encouraged to learn about an The Recommendations represent the latest individual's cultural background, personal history, research as well as the experience of care experts.