ALS

Understanding ALS in Long-Term Care: Implications for Social Service Designees and Activities Directors in Kansas

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. As muscles weaken, individuals with ALS lose the ability to move, speak, eat, and eventually breathe. While cognitive abilities are often preserved, emotional and psychological well-being can be significantly impacted.

Key Characteristics of ALS

• Gradual muscle weakness, often starting in limbs
• Difficulty speaking, swallowing, and breathing as the disease progresses
• No known cure; treatment is supportive and palliative in nature
• Average survival time after diagnosis is 3–5 years, though some live much longer

Role of the Social Service Designee

In Kansas, the Social Service Designee plays a vital role in the psychosocial care of residents with ALS. This includes:

• Emotional Support: Providing a listening ear and grief support for residents and families as the disease progresses.
• Advance Care Planning: Assisting with discussions around advance directives, end-of-life care, and hospice transitions.
• Advocacy: Collaborating with interdisciplinary teams to ensure the resident's emotional and personal needs are met.
• Coordination of Services: Connecting residents and families with ALS-specific support groups and resources.

Role of the Activities Director

Activities Directors are instrumental in maintaining a resident’s sense of identity, purpose, and joy despite the progression of ALS. Key contributions include:

• Adapting Activities: Modifying crafts, games, or group interactions to include residents with limited mobility or speech.
• Technology Use: Incorporating eye-tracking software or speech-generating devices into activities.
• Individualized Engagement: Creating one-on-one experiences that are mentally stimulating even when physical limitations are severe.
• Life Review Projects: Helping residents create memory books, audio recordings, or video diaries to preserve their stories.

Kansas Regulations and Support

Per Kansas Department for Aging and Disability Services (KDADS), care planning for ALS should reflect both the clinical and psychosocial components of the disease. Facilities must document resident choices and maintain dignity and quality of life throughout the ALS journey.

Helpful Resources:

• ALS Association – Kansas Chapter
• Kansas Department for Aging and Disability Services
• CMS Guidance on Person-Centered Planning