Guidelines for Care - Alzheimer

Guidelines for Care:

Person-centred care of people with dementia living in care homes

FRAMEWORK

January 2011

"You matter because you are you and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die."

Saunders, 1976.

2 FRAMEWORK

Guidelines for Care: Person-centred care of people with dementia living in care homes

TABLE OF CONTENTS

ACKNOWLEDGEMENTS

4

PREAMBLE

5

BACKGROUND ON THE DISEASE

8

INTRODUCTION

9

I. WHAT DOES A PERSON-CENTRED PHILOSOPHY MEAN?

10

A. WHAT ARE THE CORE CONCEPTS OF A PERSON-CENTRED PHILOSOPHY?

10

B. WHAT DOES A PERSON-CENTRED CARE HOME LOOK LIKE?

13

C. HOW DO STAFF PROVIDE PERSON-CENTRED CARE FOR PEOPLE WITH DEMENTIA? 15

D. HOW DO PEOPLE IN LEADERSHIP POSITIONS SUPPORT PERSON-CENTRED CARE?

17

II. WHAT DOES PERSON-CENTRED CARE LOOK LIKE IN A CARE HOME?

19

A. ENJOYING EVERY DAY

19

B. FEELING SAFE AND "INDEPENDENT"

24

C. PARTICIPATING IN MEANINGFUL ACTIVITIES

28

D. CHANGES IN MOOD AND BEHAVIOUR

31

III. ENSURING FAMILY INCLUSIVENESS

33

IV. EXTENDING A PERSON-CENTRED PHILOSOPHY THROUGH END OF LIFE

34

A. PAIN MANAGEMENT

35

B. END OF LIFE CARE

37

HOW CAN WE HELP YOU SUPPORT INDIVIDUALS WITH DEMENTIA AND THEIR FAMILIES? 38

APPENDIX 1

39

Rapid Evidence Assessment of Guidelines for Care. Summary of Guidelines, 2009.

APPENDIX 2

65

Additional topics requiring further evidence-based research and/or development

of optimal practice guidelines and recommendations

Alzheimer Society of Canada 3

ACKNOWLEDGEMENTS

While many individuals and organizations have assisted in the development of the Guidelines for Care: Person-centred care of people with dementia living in care homes framework, a very special "Thank you" goes to Jim Mann and Ann and Fred West for sharing their thoughts and providing support and guidance.

The Alzheimer Society would like to thank the organizations listed below for supporting this framework:

- Baycrest, Ontario - Bayshore Home Health, Ontario - Canadian Coalition for Senior's Mental Health - Canadian Healthcare Association - Clinic for Alzheimer's Disease and Related Disorders, University of British Columbia Hospital - Division of Geriatric Medicine, Department of Medicine, University of British Columbia - Faculty of Nursing, University of Alberta - Institute for Life Course & Aging, Faculty of Social Work, University of Toronto, Ontario - Mennonite Nursing Home Inc., Saskatchewan - Murray Alzheimer Research and Education Program, University of Waterloo, Ontario - Northwoodcare Inc., Nova Scotia - Providence Health Care, British Columbia - Regional Geriatric Program Central Ontario - School of Nursing, Faculty of Health, York University, Ontario - St. Joseph's Health Care, London, Ontario - Vancouver Island Health Authority, British Columbia

4 FRAMEWORK

Guidelines for Care: Person-centred care of people with dementia living in care homes

PREAMBLE

The guidelines for care framework relies exclusively on a Rapid Evidence Assessment (REA).

Rapid Evidence Assessment

Through the lens of person-centred care, a REA (Appendix 1) was completed to systematically examine practice guidelines published in peer-reviewed journals regarding the care of people in advanced stages of Alzheimer's disease living in care homes.

In ensuring the health and well-being of people with dementia, it is critically important to continuously assess and take steps to improve their health from a holistic perspective. While the Guidelines for care: Person-centred care of people with dementia living in care homes framework does not include medical, nursing or other discipline-specific guidelines, it is understood that ongoing assessment of biomedical aspects of care is essential to the overall well-being of individuals with dementia.

There has been a recent surge of interest in the use of clinical practice guidelines, new reports about ineffective and inappropriate care of clients and a renewed focus on evidence-based practice. When clinical practice guidelines are systematically developed as statements to assist practitioners about appropriate care in specific clinical circumstances, it is believed that these practice guidelines can improve the quality, appropriateness, and cost-effectiveness of care.

The development of best practice guidelines within a framework of person-centred care acknowledges personhood, while promoting the quality of care based on the best available evidence. Although the personality of the individual with Alzheimer's disease can change with the severity of the disease, this best practice model recognizes that individual personhood remains intact. The guidelines cover a broad range of care approaches to include the many aspects of person-centred care and environment. This holistic approach addresses body, mind, and spirit to ensure people with Alzheimer's disease are receiving personalized and relevant care.

Method of the Rapid Evidence Assessment

Like systematic reviews, rapid evidence assessments are based on comprehensive electronic searches of appropriate databases. As a result, exhaustive database searching, hand searching of journals and textbooks, or searches of grey literature1 are not immediately undertaken.

The functions of a rapid evidence assessment include: - searching the electronic and print literature; - collating descriptive outlines of the available evidence on a topic; - critically appraising the evidence; - sifting out studies of poor quality; and - providing an overview of the current state of the evidence.

1 Grey literature refers to material that is not formally published, such as institutional or technical reports, working papers, business documents, conference proceedings, or other documents not normally subject to editorial control or peer review. It may be widely available yet difficult to trace.

Alzheimer Society of Canada 5

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