ALS home care

ALS Home Care Explained

Amyotrophic Lateral Sclerosis (ALS) is a serious, neurodegenerative disease that is said to affect approximately 30,000 people in the USA at any given time.

It causes the damage and death of neurons in the body which are responsible for the control of voluntary muscle movement and the disease is progressive in its nature.

Less than half of people who are diagnosed with ALS live more than three years. There is no cure currently available for the disease, though some drugs and therapies can help slow down the progression of ALS and manage the symptoms.

Caring for an individual with ALS can be challenging. As the disease gradually worsens, the patient will start to lose their independence and, towards the end of the disease, will require 24-hour care.

Here we take a closer look at caring for someone with ALS at home and the challenges that need to be overcome.

What is Home Care?

Home care is usually defined as care offered at home rather than in a medical facility and support to the patient is typically provided by a family member or visiting trained caregiver. In the earlier days of the disease, this may involve giving someone help with dressing, preparing food and administering some medication. Certain therapies, such as physiotherapy and occupational therapy can also be provided to the patient as part of their home care.

As ALS progresses, the demands on the home care provider will naturally intensify. Professional home care providers may be needed to fill in the gaps for the individual’s care to ensure they get everything they need.

Advantages of Home Care

ALS patient receiving home care

Home health care, in general, has a number of distinct advantages for patients with a variety of different conditions and ALS is no exception.

  • When the patient is in a familiar environment they tend to respond better and have a greater level of health and wellbeing. They have more control over their lives and feel more independent. Given the choice, most people prefer to receive care at home.
  • Home health care providers are able to make sure that the individual diagnosed with ALS can get all the support they need and assist with daily living such as getting dressed and eating properly.
  • They provide companionship when it is needed and work with the individual to make sure they follow the appropriate nutritional guidelines and take their medication on time.
  • Home care professionals deliver valuable support for other members of the family and help them tackle the difficult issues that might arise.
  • Research shows that there appears to be fewer complications and better outcomes when someone is receiving home care rather than care in places such as a hospice or hospital.
  • In places like the USA, home care is can be a more viable financial option compared to a nursing home.

Disadvantages of Home Care

Being a caregiver is challenging and becomes increasingly so as the patient’s ALS symptoms progress and their condition worsens. For a loved one or family member, it can be doubly difficult when handling someone whose condition is gradually getting worse.

If a live-in home caregiver is to be employed, it can take time and a lot of effort to find the right person. Employing someone to be around 24/7 will be expensive and making the correct decision regarding the level of care required for the individual can be difficult particularly when the patient’s condition is changing over time.

ALS Home Care Options

There are a number of different options, however, when it comes to choosing home care. Here we take a look at the three most common:

1. Family and Friends

This is an option that most people may consider to use at some point as it’s the cheapest option and allows the patient to receive care from the people they know best. One of the big challenges with this option is time management, as many people will need to continue with their career or have other commitments to focus on.

Caring for someone with a condition such as ALS can be extremely hard work, especially towards the later stage of the disease and professional help likely going to be needed at some point.

2. Using a Home Care Agency

Care home agencies can either provide respite care as full or part-time ALS caregivers. If someone needs to work during the day, for example, the home care agency can be used to cover for them.

The challenge is finding the right home care agency. The industry sometimes has a bad reputation and different staff will be employed depending on who is available which means there is no continuity of care. 

3. Individual Caregiver

The final option is to employ an individual ALS caregiver. They will either live at home full-time or be available for a certain number of hours during the day or night. The person gets to know the family and will hopefully provide a better level of familiarity to the individual with ALS.

This basically means the ALS caregiver is employed by the family and comes with all the responsibilities that involves. It can also be challenging to find the right individual as well as costly.

Finding Home Care Help and Paying for it

ALS home care form

Finding a home care provider that fits the bill is never easy and a lot will depend on what is available in the local area. The best approach is to do plenty of research and find out whether the care company has the right staff to help manage someone with ALS.

There can be ALS financial assistance available and it is covered under Medicare in the USA. There are a number of stipulations and the services need to be ordered by a doctor as part of an overall plan of care. It can include medical social services and home help aides.