Long-term care planning and preparation among persons with multiple sclerosis

Individuals with multiple sclerosis (MS) primarily rely on informal supports such as family members and assistive technology to meet their daily needs. As they age, formal supports may become important to compliment these supports and sustain community-based living. No previous research exists exploring plans and preparations of persons with MS for future independent living and long-term care needs. We analyzed data from a random sample survey (N = 580) to assess knowledge and perceptions of future service needs using ANOVA, chi-square, correlations, and MANOVA procedures. Results indicate that overall, most respondents are not well informed and have not planned or prepared for future care needs. Persons reporting severe MS were more likely to plan and prepare. Key "entry points" for making preparations include receiving specific education and planning information, discussions with family and professional service providers, and increased age, education, and income. We recommend greater infusion of long-term care planning into these existing entry points and creation of new entry points including healthcare provides and insurers.