The challenges can be enormous for a family coping with dementia. Unfortunately, there is no cure for dementia, so this progressive disease requires long-term care planning and a careful eye towards providing supportive and safe care. A lot of people may not know what is the appropriate kind of care for those with dementia. It also requires a lot of flexibility, understanding, and compassion from a loved one’s family members and friends.
Jump ahead to these sections:
- What’s Home Care for Dementia Patients?
- What Are the Different Types In-Home Services for People With Dementia?
- How Do You Know If a Dementia Patient is Ready for Home Care?
- How Do You Usually Pay for Home Care for a Dementia Patient?
- How to Find the Best Home Care for a Dementia Patient
- Questions to Ask In-Home Caregivers During the Hiring Process
- What Are Alternatives to Home Care for a Loved One With Dementia?
One of those options available for those with dementia is care at home. Below we detail what home care consists of, and how it can be helpful for those with dementia.
What’s Home Care for Dementia Patients?
Home care for dementia patients is intended to keep someone in their home for as long as possible. Dementia progresses differently for everyone, meaning that this might be possible depending on the disease’s trajectory. Some dementia patients decline slowly and have few medical problems along the way. Others have a more rapid decline complicated by pre-existing chronic medical issues.
Home care can provide enough support for many patients by taking some of the caregiver load off of family members. Safety and well-being are the focal points of care, along with mental stimulation and companionship.
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Difference between assisted living, nursing home, and home care for dementia patients
Assisted living and nursing home care for dementia patients are both residential care communities with a few differences. Home care is caregiver support in the home either through private pay or insurance.
Many families prefer to keep their loved ones at home as long as possible and delay assisted living or nursing home care. With enough home care, this is possible, although the cost can get prohibitive.
Individuals with mild cognitive impairment often can do well in assisted living. The kind of support offered in assisted living can be enough to keep someone safe, active, and reasonably independent.
With the help of aides, planned meals, and structured activities, residents can manage until they get worse. Assisted living is not specifically designed to handle people with memory problems, but their staff can help residents who have memory problems.
Memory care communities are designed for people who can’t manage at home or assisted living. Wandering, aggression, severe memory problems, and self-harm may also lead to a recommendation of memory care.
As a result, memory care units are locked and secure. Their staff provides one on one supervision when necessary, and activities focus on individuals with cognitive impairment.
Nursing home care is intensive medical care when no other option is available. A person with dementia and no medical needs is unlikely to be admitted to a nursing home. They must have a skilled need such as nursing or physical and occupational therapy. The kinds of medical issues that qualify someone for nursing home care are:
- Mobility and transfer problems
- IV medications and injections
- Wound and catheter care
- 24-hour nursing and aide care
Home care is a valuable service that provides private caregivers to look after a loved one. Scheduling is very flexible, so you can contract for the hours you want and change those according to your loved one’s needs.
Each state sets restrictions for what tasks a caregiver can and cannot perform. Some states allow for more medically oriented duties, and others are more restrictive. Make certain you are familiar with what a caregiver provides in your state to ensure home care can provide the care you need.
At a minimum, caregivers can offer transportation, shopping, cooking, light housekeeping, organizing, and companionship. According to Genworth, the median cost for care for caregivers was $22.50 an hour. This cost will vary across the country and depends on the number of hours you need.
If you decide not to go through an agency and hire on your own, be aware of some potential issues. Consider liability insurance, conduct criminal background checks, and have back-up care if someone is a no show.
What Are the Different Types In-Home Services for People With Dementia?
Aside from private in-home care through an agency and insurance-covered home health, there are a few other types of care that you or your loved one might be eligible for. Dementia care at home, unless provided by family, is challenging to find but worth investigating since it could offset the cost and strain of other types of in-home services.
Medicare home health care
If you have Medicare, home health care is offered as a time-limited medical service for people who qualify. One of the eligibility requirements is that the person receiving this service can participate in therapies and have a nursing need.
For someone with dementia, it could prove challenging to follow instructions and benefit from home health care. But it is worth a try and could provide two or three months of relief and some functional improvement. One of the services home health offers is assistance with bathing, dressing, and hygiene.
VA Aids and Attendance
The VA Aids and Attendance program, which we mention as a way to pay for care, is designed to assist veterans with personal care needs. For veterans and their spouses who qualify, the VA provides a monthly stipend to pay caregivers to come to the home and help with bathing, transfers, toileting, medications, hygiene, and other tasks. Simply having dementia is not enough. A veteran must have physical needs in addition to or as a result of dementia.
Caregiver support programs
Some states have caregiver support programs that allow the recipient to pay family members to provide care. These programs, although significant, do have income and asset criteria that require the person to qualify for Medicaid.
Each state program is a little different, but the goal is to give as much assistance in the home as possible to keep the person safe and cared for. People with dementia who have functional care needs can qualify for the program if they meet the financial criteria.
You may think of hospice care as support for people with a terminal condition, and it is. But it is also much more. As long as your loved one has a qualifying condition, hospice can support and comfort your loved one at home while assisting with bathing, dressing, hygiene, transfers, medical equipment, and pain relief. If your loved one has dementia along with qualifying medical conditions and no longer wants to access outpatient medical treatment, hospice can help.
How Do You Know If a Dementia Patient is Ready for Home Care?
Dementia is a progressive disease. The course of the disease will vary for each person, but almost everyone gets worse over time. Why is this important? Because convincing a loved one to accept care in the home can get much more challenging over time. It’s better to start planning for home care sooner rather than later. These are some of the signs that someone with dementia might be ready for home care.
- Safety concerns. Safety concerns should be taken seriously. If your loved one shows any of these signs, it is time to get some help: leaving the stove on, wandering, falling, problems with shopping and cooking, and difficulty managing finances.
- Vulnerability to exploitation. If you don’t have healthcare and financial power of attorney, you may want to get them both as soon as possible. Having advance directives gives you the authority to intervene if your loved one is being exploited or you need to obtain vital healthcare information.
- Deferred or neglected home maintenance. Keep track of whether your family member has neglected home maintenance to the point of creating potential safety hazards. Examples are electrical or plumbing problems, structural issues like roof repair or replacement, and inability to manage lawn care. Another possible cause of neglected home maintenance is the mismanagement of finances due to confusion over bill paying. If the utilities are disconnected, it is most likely because of overdue bills. With financial power of attorney, you can take over bill paying.
- Self-neglect. Self-neglect is a common characteristic of dementia. It can start slowly and be difficult to recognize. Signs of the inability to care for oneself are poor hygiene, soiled clothing, medication mismanagement, and medical neglect. Individuals with dementia often refuse to accept help, which exacerbates all of the other problems. Self-neglect can also lead to health-related issues such as an increase in infections, dehydration, and malnutrition.
- Isolation. Isolation might not seem like a significant problem at first, but it can lead to depression and anxiety. People become isolated when they can no longer drive and which separates them from friends and family. Memory issues can cause someone to feel uncomfortable in social situations, so they avoid them altogether.
How Do You Usually Pay for Home Care for a Dementia Patient?
Dementia care through an agency or hiring on your own is private pay. The only possible way to offset those costs is if your loved one has a long-term care insurance plan that covers in-home care, and there might be a 90-day elimination period.
If your family member is a veteran or the spouse of a veteran, there may be support services available through the Veteran’s Administration. One such program is the Aid and Attendance program. The Aid and Attendance program does have income and asset requirements. Through Medicare, home health care can provide short term nursing and rehabilitation, but home care is the only long-term option.
How to Find the Best Home Care for a Dementia Patient
Looking for and finding the best home care for a dementia patient depends on several factors. On the one hand, you may have few options or on the other, you may have an overwhelming number of choices. Either way, take your time by following our tips to find excellent home care.
Look for specialized dementia care
More and more home care agencies offer specialized dementia training to their caregivers. Ask the agency specifics about their training.
Are all caregivers trained in dementia care or only select ones? What is their lesson schedule, and what topics do they discuss? Ask about emergency procedures and dealing with aggressive patients. What criteria does the agency use when deciding to withdraw care?
Ask for recommendations
Talk to friends, other family members, and health care providers to get recommendations. Most home care companies are franchises, which means that corporate culture is important, but each franchise is independently owned and operated.
Once you have your recommended agencies, call and speak with the owner. Inquire about caregiver coverage, lines of communication, and mandatory training. Find out about caregiver notes, whether they are handwritten, and if they are available online.
When you have identified the agencies you are interested in, ask for references. In addition, consider calling families that are using or have used the company and ask these questions:
- Have you been satisfied with the service?
- What do you like most and least about the agency?
- Is there seamless handling of caregiver absences?
- Has communication and scheduling gone well?
- Do the caregivers seem well-trained, compassionate, and responsible?
Meet any potential caregivers
Once you have contracted with an agency for home care, ask to meet two or three potential caregivers in the company of your loved one who has dementia. This introduction will give you a chance to see how everyone interacts.
In addition, it can also help when the caregiver starts the first shift, so it is not as much of a shock. Having some familiarity might make things go more smoothly for someone with dementia.
Questions to Ask In-Home Caregivers During the Hiring Process
The hiring process for in-home caregivers is vital to a successful working relationship. Any questions you ask during the hiring process should be verified with previous employers or clients.
When a caregiver works for an agency, much of the vetting process may already be complete, including background checks and drug screening. If you’re hiring outside an agency, you will want verification that the caregiver has completed these requirements.
What experience do you have working with dementia clients?
Having experience working with someone with dementia is preferred, but depending on your choice of caregivers, it may not be a requirement. People with dementia vary in their needs and behaviors, and a caregiver should be comfortable adapting to those. Learning on the job is probably not ideal.
How do you handle challenging behaviors?
Not every person who has dementia exhibits challenging behaviors, but many do. As the disease progresses, sometimes behavior does, too. Ask specifically about angry outbursts, inappropriate language, and agitation. What does the caregiver do in these cases? Do they feel comfortable handling changing behaviors?
What dementia-related activities do you use?
Dementia-related activities are not a one-size-fits-all category, but an experienced caregiver should have a repertoire of ideas. Ask for their views on appropriate activities, and specifically, diversionary strategies when someone is frustrated or agitated. Complicated, multi-step activities are typically not suitable for people with dementia and can create frustration and confusion.
How do you handle emergencies?
Ask for examples of how the caregiver has handled emergencies. Do they have CPR and first-aid training? How would they describe their personality style during times of stress?
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Why are you a caregiver?
Of all the professions someone could choose, caregiving is unique in that it requires enormous compassion, empathy, and patience. Many caregivers have personal stories of taking care of a family member. They may have become attracted to a profession that brings out their nurturing personality. In other cases, a caregiver might be gaining experience to pursue a nursing degree.
What skills do you bring to a caregiving job?
Skills can mean hands-on ability to transfer, bathe, cook, or reinforce functional exercises. But look for personality skills and attributes such as flexibility, empathy, patience, responsibility, and creativity. It takes some self-awareness to identify aspects of one’s personality that are crucial to caregiving.
What Are Alternatives to Home Care for a Loved One With Dementia?
We have covered the other options for a loved one with dementia, but let’s look at the circumstances that will help you decide which way to go. It isn’t easy to know when to move to the next level of care since such a move could be disruptive and confusing. The important thing to remember is that when you change a level of care for your loved one, give it time and provide plenty of support.
Most assisted living and memory care communities offer respite care. In most cases, there is a furnished room for your loved one along with all of the usual services that they would receive if they moved in. Think of respite care as a short-term solution, typically about two weeks but not longer.
Respite care can serve two purposes. One is to give family caregivers a break. Many families choose home care services but also continue to provide some level of care themselves. Respite care offers some relief from those duties and can be especially helpful for going out of town when you don’t want to hire additional in-home care while you’re away.
The other purpose of respite care is to acquaint your loved one with the idea of memory care or assisted living gradually. Respite stays allow your loved one to bond with the staff and get used to activities and meal service.
At some point, the cost of in-home care may start to exceed the price of an assisted living community. Unfortunately, if your loved one requires that much assistance, it’s unlikely that they will be a good fit for assisted living.
But in cases where in-home caregiving is too complicated to manage, consider assisted living over memory care if you think your loved one can handle that level of independence. If they wander, assisted living will not be a good option, since the door to the outside is probably not locked during the day.
You may be quick to assume that memory care is a logical option for your loved one, and that might be the case. But think carefully about the decision for these reasons.
In memory care, there’s usually no distinction between levels of impairment. Your loved one could be living with people who are far worse and have disturbing and upsetting behaviors. There may not be an answer to this dilemma but ask about the mix of people in memory care (which can change over time). Waiting for as long as possible might be worth consideration.
Nursing home care
Nursing home care, for most people, is the last resort. The expense, potential for infections, and inadequate staffing are some of the reasons. And who wants to spend their remaining life in a hospital-like setting? Despite these drawbacks, there may come a time when nursing home placement is necessary if you or in-home assistance can’t keep your loved one safe or supported at home or in assisted living.
A Guide to Dementia Home Care
For someone who has dementia, their everyday experience can be frightening and confusing. However, by working in conjunction with them and the care of physicians to help your loved one, you can find the right home care for your loved one. Acting early to find good home care can help your loved one stay safe and improve the quality of their life.
If you're looking for more help caring for a loved one with dementia, read our guides on books on dementia and how to move a parent with dementia to assisted living.