Home Care and Huntington’s Disease

Home Health and Hospice agencies care for patients with progressive brain disorders such as cancer, ALS, Parkinson’s disease, Alzheimer’s disease, and Huntington’s disease. Huntington’s disease is a progressive hereditary brain disorder that usually develops between the ages of 30 and 50.  The early symptoms can be vague and exhibit as irritability, depression, or difficulty grasping new information. These are often accompanied by physical indicators such as loss of coordination or small involuntary twitches. As the disease progresses these small twitches become more pronounced, making it difficult to walk, stand or even swallow. Huntington’s disease will eventually result in severe mental and physical disability.

The benefits that home health care provides neurological patients with physical disabilities is obvious. What may not be obvious is how home care can reduce the confusion and anxiety that a patient with diminished brain function experiences when leaving their safety zone. Oftentimes even leaving the confines of their bedroom can be overwhelming for them.

When marketing your services always emphasize the emotional benefit that Home Health and Hospice provides patients and their families. No one wants to see someone they love suffer, let alone become agitated to the point of sedation while being transported for treatment. Home Care minimizes episodes of agitation and in some cases can almost eliminate the need for a patient to leave home at all.

With May approaching, and being Huntington’s Disease Awareness Month, here are some ways your agency can get involved:

• Partner with your referral sources and sponsor a TEAM HOPE WALK to raise awareness and provide hope for those suffering with Huntington’s Disease.

• Organize a SRIKE OUT HD night at your local bowling alley. Encourage other Home Care and Hospice agencies to join you to raise awareness. Be sure to invite the local Media, and don’t forget to post the event on your social media outlets.

• Get involved with local brain injury support groups. Provide refreshments and information on your company’s respite services and in-home support for caregivers.

Support Resources:  The Michael J. Fox Foundations - Parkinson’s Support | National Brain Tumor Society  | Brainline |HDSA

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Dementia care matters. Show your commitment this February.

Americans are enjoying longer a life expectancy than ever before. One unfortunate fact that accompanies a longer lifespan is the increased likelihood that a person will develop Alzheimer’s disease or another dementia.

According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s today. This could grow to as high as 16 million by 2050.

Home health care and hospice providers are in a unique position to strengthen their Alzheimer's and other dementia care services and become community leaders in education and awareness.

Feb. 14-Feb. 21 is Alzheimer’s Disease and Dementia Care Staff Education Week. Use this health observance as a springboard for a year of enhanced attention for Alzheimer's disease and other dementias.

• Start with a visit to the official observance page of the National Council of Certified Dementia Providers. While you’re there, you can download a free Staff Training In-services and Tool Kit to help kick-start your efforts. The kit includes a Power Point presentation, interactive exercises, and more.
• While it won’t be appropriate for all providers to develop a dementia care specialty, all providers can benefit from improving their knowledge of current best practices when it comes to dementia care. Make sure all of your in-home care providers receive a digital copy of the Alzheimer’s Association’s guide “Dementia Care Practice Recommendations for Professionals Working in a Home Setting.”
• Contact your physician referral sources and underscore your commitment to treating patients with dementia. Take along a copy of the patient education guide you use with to help educate patients and their family members as you integrate them into their care.
• Don’t limit your educational efforts to professionals this month. Provide additional support to those who are providing care for a loved one with dementia. Create a flyer about the care fundamentals for Alzheimer's disease and other dementias --  be sure to include the resources available within your organization.
• Increase your visibility at community events this February and distribute brochures or flyers that highlight the services you provide for those with Alzheimer’s disease and other dementias.

Help Alzheimer's awareness take center stage this June

About 5.4 million Americans are living with Alzheimer’s disease, making it the most common form of dementia, according to the Alzheimer’s Association.

There is no cure for the progressive brain disease that causes problems with memory, behavior and thinking, but scientists are continually making advances in efforts to slow the disease, catch it early or prevent it altogether.

June is Alzheimer’s & Brain Awareness Month. It’s a great time to position your agency to be an advocate for those with the disease and their caregivers.

• Visit the Alzheimer’s Association’s website for this health observance to get started. You’ll find ways to Go Purple this June to show your support, and ways to take action, including participating in The Longest Day on June 21.
• Stock up on personalized Alzheimer’s disease brochures versioned to home health, private duty or hospice and distribute them at events throughout the month to educate about the condition and how you can help. Consider enhancing the tools you currently use to educate patients and their families about this condition with a comprehensive patient education guide.
• Donate board games or puzzle books to local assisted living facilities that contain your company’s logo and contact information. Sponsor a game night and spend time with the seniors in the facilities talking about the importance of enriching senior brain power.
• Partner with non-competing providers and organize a Caregiver Appreciation Day for the family, friends and others who care for those with Alzheimer’s disease. Include discussions, activities, refreshments and even massages for this selfless group. Offer free or reduced cost respite care for attendees who need it.
• Begin an effort to create a cookbook based on the recipes of your agency’s Alzheimer’s patients. Encourage the patients or their family members to write down the patient’s most loved recipes. When you have a few dozen, compile a recipe book to honor their legacies and their culinary contributions. Print out and distribute the books in your market or sell them and donate the money raised to the Alzheimer’s Association. Be sure to let the media know about your efforts during the collection process and when it is finished.
• Sponsor a lunch at a local neurologist’s or gerontologist’s office to introduce your company’s services. Ask to place the physician on a local speaker’s event in order to begin networking his practice. Most specialists of this nature are stand-alone physicians or members of small medical groups and would love the community exposure a speaking engagement would bring.
• Download and print out the Alzheimer’s Association’s list of the 10 Early Signs of Alzheimer’s. Distribute this at senior centers, places of worship, and ALFs. The agency also has a great online Alzheimer’s facts page.
• Review the toolkits offered by Alzheimer’s Greater Los Angeles, the Alzheimer’s Association, ACT on Alzheimer’s and Delaware’s Division of Services for Aging and Adults with Physical Disabilities. These provide a wealth of information on the condition, ways to educate your community, and more.