Care planning refers to the delegation of tasks to supportive people as the individual with ALS loses the ability to perform those tasks themselves. Generally speaking, these considerations are made in a context where the individual is still living at their own home or with family. In a care facility or hospice, care planning is largely handled by the institution itself.
Care needs will continue to evolve as ALS progresses.
Caregiving resources allocated by government or private insurance typically require assessment from a qualified individual, such as a physiatrist.
The patient should be reassessed when there is a significant change in their needs or abilities. The patient or their family may need to be proactive about seeking reassessment.
Care needs can be fulfilled by:
The resource performing a given task must be able and qualified to perform it. Only a physician or qualified nurse should administer medications. On the other hand, anyone is qualified to change the channel on a TV.
It is desirable to place the largest possible burden on care providers that are external to the family, especially those provided by government or insurance providers. The less work that family and friends have to do, the easier it is to preserve those relationships.
Private care billed by the hour is expensive and should be minimized when the funds are coming from out-of-pocket.
| Task | Resource | Notes |
|---|---|---|
| Breakfast preparation | UAP - one hour morning visit, government-funded | – |
| Nail cutting | Family member | Most UAPs are not able to do this task; it's likely not worth paying for a private service either |
| Lunch preparation | Meal delivery service | Convenient |
| Wound care | Nurse | Not suitable for family or UAPs |
| Cleaning the garage | Family member | Personal task; not covered by government or insurance |
An individual with ALS may need only a few hours of assistance per day in the early stages of the disease; as the disease progresses, they may require 24-hour care.
Care resources allocated to the patient by government or insurance typically have weekly or biweekly coverage allocations, and are subject to the availability of certain timeslots.
Caregiving agencies are often less able to provide reliable coverage on weekends compared to weekdays, especially on short notice. The staff of these companies place the same value on having weekends off as anyone else in the wider population.
Certain times of day, such as common waking and sleeping times are harder to get from caregiving agencies since there is higher demand from other clients.
In the case of having control over when outside caregivers are to provide services, the following factors should be considered when creating the schedule:
Respite for primary caregivers: Family, or a live-in caregiver should be given time off that is most conducive to their ability to rest and recharge. These people should be consulted when making these decisions. In most cases, they will want fewer, larger sections of time off to make it easier to disconnect and do other things.
Alignment with time-sensitive tasks: Many tasks must occur at a certain time of day, such as the tasks associated with waking or going to bed. Other tasks, such as bathing, may be more flexible. It is desirable to place the burden of the most strenuous tasks on outside help as opposed to primary caregivers.
Minimization of interruptions: Coverage that interrupts daily activities such as afternoon outings should be avoided if possible.
Tasks should be kept as straightforward as possible, so that the people performing them can do so independently. Diagrams of living areas and the kitchen are probably helpful. Cabinets and drawers could be labeled.
Any task that is not straightforward should be documented in a notebook. This is especially important in circumstances where the individual receiving the care is not able to clearly communicate their needs and how to satisfy them. It also saves time when working with a new caregiver that is not familiar with the individual or the home.