Involving People with Memory Loss in the Development of a Patient Handbook: A Strengths-Based Approach

A memory clinic used two key approaches in developing a patient and family handbook: partnership with people with memory loss and strengths-based social work practice. Social worker coeditors of the handbook intentionally sought guidance from people with mild to moderate memory loss regarding handbook content, design, and overall tone. A focus group, three sessions of a review group, e-mails, and personal interviews were used to solicit and review input from participants. The editors also incorporated content contributions in the form of essays, quotations, and an original poem from people with memory loss, alongside contributions from clinic staff, university faculty, and community service providers. People with memory loss provided input in five areas: response to a new diagnosis, coping with memory loss, messages to other newly diagnosed people and health care professionals, available community resources, and recommendations for handbook design. The development process reinforced a key message of the handbook: People with memory loss exhibit ongoing strengths, which help them participate in life. The process also ensured that the handbook content and design would be relevant and applicable to its users. The handbook is now regularly distributed as a primary patient education tool in the memory clinic and community programs.