Parkinson’s Homecare: What you need to know

Parkinson's Homecare - Davis Phinney Foundation

Written in collaboration with Bud Rockhill who was a long-time Parkinson’s care partner to his mother

In the previous post, we addressed the issue of home healthcare for people with Parkinson’s. Today, we’ll address the second type of assistance you can receive in your home: homecare.

Homecare provides in-home assistance for Activities of Daily Living (ADLs) that are not medical to allow you or your loved one to maintain independence. Activities of Daily Living are the necessary daily activities people must be able to do to continue to live independently. There are several variations on the list, but there are five basic categories that are often referenced as ADLs:

  1. Personal hygiene, including bathing/showering, grooming, nail care, and oral care
  2. Dressing and undressing
  3. Eating
  4. Maintaining continence, with both the physical and mental capacity to use a restroom, including getting on and off the toilet
  5. Transferring – the ability to stand up from a seated position, get in and out of bed, and walk independently (including with a walker or cane)

Medicare and Medicare Supplement plans usually will NOT cover homecare. However, a long-term care policy often does include it. (Note that long-term care is not the same as long-term disability). Also, some Medicare Advantage programs may include homecare coverage.

While long-term care policies were more popular ten or twenty years ago, people who have this type of policy should review the terms to see what is covered and if homecare is included. The specific coverage will vary by policy, with some having a daily dollar limit and some having a total limit. For example, a policy might limit the daily reimbursement to $100 per day and the total reimbursement over the period for which homecare is provided to $5,000.

Many of these policies require the individual to pay the homecare expenses out of pocket before the reimbursement from the long-term care policy begins. This period of time is called the “elimination period”, which is basically the deductible the policy owner is responsible for paying before any insurance reimbursement will kick in. Please make sure that whoever is managing your care decisions and finances researches your options thoroughly and understands the policies and expenses before hiring a homecare agency.

Selecting a Homecare Agency

Finding a homecare agency is an important and personal decision. It’s estimated that more than half of all caregiving is provided by a family member. Of the other half, care or help is often provided by a neighbor or friend.

Therefore, making the decision to hire a homecare agency rather than relying on a family member, friend, or neighbor is difficult. It can be hard to admit that you need help, and hard to allow strangers to have such personal interaction with a family member. Also, it results in additional expenses that can be difficult to come by.

However, it does not need to be an “all or nothing” decision. Sometimes, having a homecare agency is a great way to provide a short break – both mental and physical – to the family member or friend who is the primary caregiver.

There are several places to look for a homecare agency:

  • As with home healthcare, your doctor or medical group may also provide recommendations
  • Many county websites have a department of health and human services or department of aging that lists providers
  • Religious organizations may have affiliated or referred agencies
  • You may be able to find an “Aging Lifecare Specialist” whose job it is to act as a “concierge” or resource manager to help you save time and provide referrals to trusted providers

Other considerations in evaluating and selecting a homecare agency:

  • A reputable agency will have insurance, train their staff, and conduct background checks before hiring caregivers, whereas most caregivers who are friends and neighbors will not have insurance or formal training.
  • The most important considerations for most people in selecting an agency are the safety of the care recipient and the quality of care. Therefore, it may be prudent to choose an agency whose caregivers are employees rather than independent contractors. This employer-employee relationship provides you with additional protection because it ensures that the agency has workmen’s compensation and is responsible for paying their employees’ payroll taxes.
  • The federal government’s classification of a caregiver includes employee status. Some people try to operate independently to avoid paying taxes, which could jeopardize the quality of care and create liability issues.
  • In most cases, be aware that there will be more than one caregiver who serves you or your person with Parkinson’s. Rarely will you have one dedicated person providing care. This provides some variety in personalities and can add to the social interaction. On the other hand, you or your care recipient may not get along with every caregiver; so, be sure to exercise your right to request a change if desired.
  • In terms of reliability, an agency will be responsible for finding a replacement caregiver if the person scheduled cannot show up for an appointment. Friends and neighbors, on the other hand, have their own lives to manage and sometimes cannot prevent a last-minute schedule change. This can create unnecessary chaos in your home if it happens too often.

Interviewing the homecare agency

It’s essential to interview each homecare agency you consider. Here are a few things to consider:

  • Prior to an in-person interview, conduct a phone conversation to learn the basics. This will also help you assess responsiveness, courtesy, clarity, and the ability to build a rapport over the phone.
  • The first interview can be conducted at the agency office or the home (or both).
    • Some adult children will prefer to conduct the first visit at the agency so that they “pre-screen” the agency before introducing anyone to their parent
    • A home visit allows the agency representative to assess the physical surroundings and understand the environment in which care will be provided
    • The family should be ready to explain the medical status and physical capabilities or limitations of the person who will receive the care and have an initial list of services they need provided
    • The family should also explain the daily routine of the person receiving the care – the goal should be to minimize any disruptions that could cause anxiety
    • The agency may then be able to suggest other services that the family has not considered
  • In evaluating and selecting a homecare agency, questions you may want to ask include:
    • What are the minimum number of hours per week required for a person to be employed as a caregiver?
    • What specific training is provided to caregivers about Parkinson’s (or other neurological disorders)?
    • What types of checklists or standard procedures are provided and used by caregivers?
    • What type of feedback or reports will the family receive?
      • Is there a standard reporting procedure?
      • Families and caregivers can also benefit from having a care log – a notebook used by the caregivers to note things about the visit. For example, did the person with Parkinson’s have trouble eating or refuse to eat? Did they take their medications? Were there any physical/mental changes or general observations about temperament and interaction worth noting?
    • What are the basic rules of care and service?
      • Can a caregiver sleep if they are working overnight?
      • Can they eat?
      • How does the caregiver verify arrival and departure time? For example, some agencies use a call verification system and the caregiver must call when they arrive and depart from the home.
    • Is the caregiver allowed to drive the person with Parkinson’s to appointments or does the agency offer a separate service with a medical transport vehicle?
  • The family should discuss the amount of care they expect is needed and ask about costs and billing timing/procedures.
    • In the case of a chronic condition or very limited mobility, is 24/7 care needed?
    • With limited mobility, is one caregiver sufficient or will two be needed?
    • Is there a minimum number of hours per shift? Depending on geography, many caregivers may either have a long commute or rely on public transportation, and to make it worthwhile, the agency may require a four-hour minimum shift.
    • If there is a long-term care policy in place? The family should explain that the agency should coordinate billing.
    • What type of insurance and bonding is provided if the caregiver has an accident or the family believes that something has been stolen?

While the process may seem daunting and the costs intimidating, the goal is to make sure the person receiving care is safe, receives their medications on time,  practices good hygiene, and stays as engaged and mobile as possible. A person whose medical condition requires care from a family member or homecare agency is at risk of loneliness, helplessness and boredom – and a home caregiver can alleviate these.

If you’ve decided Parkinson’s homecare is right for your family, here are a few mistakes to avoid

#1 – Underestimating care hours

Because of the expense and the reluctance of some people to admit that outside help is needed, a common mistake when working with a homecare agency is to underestimate the number of hours needed.  The most important goal with homecare is to make sure that the person who needs the care is safe and comfortable.  Because this is an adjustment for everyone, it can be worthwhile at the beginning to start with more coverage than might ultimately be needed and then adjust down rather than up as you learn more.

#2 – Engaging in backseat driving

Based on family structure, geography, and dynamics, it’s usually best to have one person as the “point person” to work with the homecare agency on scheduling, communications, and feedback.  A successful homecare program depends on ongoing communications between the family and the agency regarding logistics (Is the caregiver on time? Is the caregiver doing everything on the list?) and the relationship (Do the caregivers get along with the person with Parkinson’s? Are they a good match to their personality?).

Problems sometimes occur within the family when one or more family members, who often live in another city or state, become critical of the care plan and management and turn into “backseat drivers.”. In these situations, families may want to establish the “ground rules” in advance, designate one representative, and then have periodic meetings or calls that include asking the person with Parkinson’s to review the quality and effectiveness of the homecare plan and agency. If everyone has a say and tries to be heard on every decision, it can become chaotic and disruptive to the person with Parkinson’s.

#3 – Accepting too much turnover

Given the realities of the homecare business, there is often turnover with staff and most patients will have several caregivers over the course of their care. A well-managed agency will do its best to have a set schedule and limit the number of caregivers so that a relationship can be established, but caregivers often have their own families to care for and there can be unexpected changes. If the turnover becomes too much for you or your person with Parkinson’s to handle, speak up.

#4 – Neglecting self-care

The demands of caring for a family member with Parkinson’s or another chronic illness can be physically and emotionally exhausting. So exhausting that it’s easy for family members to neglect their own health and well-being. But that lack of self-care usually backfires and causes stress to the caregivers, care partners, and the person with Parkinson’s. Remember that the care you provide to someone else is only as good as the care you provide to yourself.

We hope this information on homecare is helpful to you as you navigate your journey with Parkinson’s. If you have anything to add about your experience with homecare, please share it in the comments.


Want More Practical Articles Like This?

Much more can be found in our latest edition of Davis Phinney Foundation’s Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your copy of the Every Victory Counts manual by clicking the button below.

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