Learning how to care for a loved one with Alzheimer’s can turn a family’s collective life upside down as everything from communication to hygiene requires a new lens. In addition to the natural physical progression of the disease (such as difficulty eating and incontinence), families are faced with things like navigating personality changes and taking away privileges like driving, and it can be a very overwhelming and isolating experience for a caregiver.
These issues are further exacerbated by the fact that families believe they have to go through this disease alone, says Monica Moreno, the senior director of care and support at the Alzheimer’s Association. “They don’t know how to navigate the complex health care system,” she notes. “They don’t know where to go for education, resources and support. They don’t know what to expect in the future and what they need to do to plan for that.”
This is where an Alzheimer’s care consultant (aka dementia consultant or dementia care navigator) comes in. A care consultant who specializes in dementia, or Alzheimer’s specifically, has the expertise and understanding of the disease to guide the family on this challenging journey. Below you will find information on what that can look like, as well as advice and tips from experts on how to find the right consultant for your needs.
What is an Alzheimer’s care consultant?
While they may go by various titles such as dementia consultant, geriatric care manager or dementia care navigator, an Alzheimer’s care consultant “has expertise in understanding Alzheimer’s disease (and likely other related dementias) as well as the resources in their community that can be helpful to the person with dementia and their family,” says Marie Clouqueur, a licensed independent clinical social worker, therapist and geriatric case manager who also leads the dementia caregiver support program at McLean Hospital in Belmont, Massachusetts.
There is no specific certification for this line of work, adds Clouqueur. However, an Alzheimer’s care consultant may have a clinical background (in nursing or social work, for example), or they may have applicable training or personal or professional experience in caring for people with dementia.
Although some health insurance plans, medical clinics or other healthcare organizations offer these services, many families have to pay for an Alzheimer’s care consultant out of pocket, says Clouqueur. However, a pilot program through the Centers for Medicare & Medicaid Services (CMS) called the Guiding an Improved Dementia Experience (GUIDE) Model aims to support people living with dementia and their unpaid caregivers, including providing them with a care navigator.
“It’s a game-changer to ensure that our families are given a dementia care navigator from the point of diagnosis to help them navigate through this complex experience,” says Moreno. This will ensure they have what they need to live their best life possible, “with the goal of reducing the chance of them going to the emergency room, reducing hospital utilization and ultimately, keeping them home and in their community for as long as possible.”
“It’s a game-changer to ensure that our families are given a dementia care navigator from the point of diagnosis to help them navigate through this complex experience.”
— Monica Moreno, the senior director of care and support at the Alzheimer’s Association
Key responsibilities of an Alzheimer’s care consultant
While there is no one definition or scope of practice for an Alzheimer’s care consultant, “most dementia care consultants will [help] caregivers better understand complex concepts of dementia, such as types, stages, expected symptoms and typical progression,” says Adria Thompson, a licensed speech-language pathologist and dedicated dementia care educator and consultant.
In addition to providing valuable guidance toward resources and education, the responsibilities of an Alzheimer’s care consultant may include the following, according to the experts we spoke to:
- Developing a care plan based on the needs of both the person with dementia and their family.
- Supporting caregivers as they work through challenging situations, like taking away a car or revoking other privileges.
- Helping caregivers with dementia-related behaviors by identifying triggers and managing the results.
- If providing in-person support, they may attend doctors’ appointments or accompany the caregiver on tours of long-term care communities.
- Connecting them with resources and programs, such as respite services.
How an Alzheimer’s care consultant can benefit families
With the unrelenting level of care required, it’s not surprising that studies show that unpaid caregivers of patients with dementia are at an increased risk for depression. “As those care needs continue to grow, and more and more of those responsibilities fall on the caregiver, they may become more isolated,” says Moreno. “They may become depressed. And if they don’t know that there are resources available to them, like the Alzheimer’s Association or services in the community, and they’re doing this all on their own,” they may neglect their own physical and mental health.
On the flip side, there are numerous benefits to hiring an Alzheimer’s care consultant: Thompson reports that her clients say they have “more patience with the person they’re caring for with dementia [because] they have the information to better understand the disease. This results in more empathy and having less stressful and more effective communication.”
Additionally, they will save time and energy on locating and vetting resources, says Clouqueur.
“As a loved one’s condition progresses, the list of things that family caregivers are responsible for grows such that even the sheer number of decisions can be exhausting,” she notes. “And while a family member is likely going through these experiences for the first time, a care consultant has seen dozens or even hundreds of cases from which they draw perspective and wisdom. The family can benefit by off-loading some of the mental and logistical load and by not feeling so alone in the decision-making process.”
“A diagnosis of Alzheimer’s or dementia can be among the most difficult challenges of a person and family’s life, affecting people cognitively, emotionally, physically, relationally and spiritually. The weight of the experience invites — or even necessitates — people to cultivate and utilize networks of help, be it through natural support of family and community or through professional assistance.”
— Marie Clouqueur, a licensed independent clinical social worker who leads the dementia caregiver support program at McLean Hospital in Belmont, Massachusetts
When to consider hiring an Alzheimer’s care consultant
Hiring an Alzheimer’s care consultant should be at the top of a family caregiver’s to-do list, but it’s also never too early or too late to build out your care team with the addition of a dementia expert.
“People should consider hiring an Alzheimer’s care consultant when they are not sure how to understand or meet the needs of their loved one with dementia,” advises Clouqueur. “It could be that the family feels overwhelmed by the diagnosis; that the person with dementia is experiencing challenging symptoms like withdrawal or agitation; that activities of daily living like dressing or bathing have become more challenging; that there are safety concerns like giving up driving or fall hazards.”
She continues, “A consultant can also be helpful if various family members differ in their perception of what is needed. The consultant can help with education and guidance to create a shared understanding of the situation and goals of care.”
An Alzheimer’s care consultant can also be helpful for “solo agers” (those who don’t have family or close friends) who receive a dementia diagnosis, adds Clouqueur.
What it’s like to work with an Alzheimer’s care consultant
The process of working with an Alzheimer’s care consultant will largely differ from family to family and from consultant to consultant. As Moreno says, “There are no two people who experience this disease in exactly the same way. There are no two families who experience this disease in the same way.” And therefore, dementia navigation services need to be person-centered.
However, in general, a person can expect to start their Alzheimer’s care planning with an initial conversation with a consultant “for fit” and to establish a “high-level understanding of the family’s situation and what the consultant can offer,” says Clouqueur.
The family may then be asked to sign a contract that outlines the fees and services. Following that, they may meet to address any immediate needs and then again in the future as more symptoms emerge as the disease follows its course, adds Clouqueur.
Since Alzheimer’s is a progressive disease, the family’s needs will change over time, says Moreno. “Having this navigator there to assess what the new needs are that the family has when those changes are occurring and then helping to implement home care,” or whatever else is needed is critically important, she adds.
“Because Alzheimer’s has very unique challenges, [it’s important to] make sure that [consultants] … have an understanding around Alzheimer’s and dementia. Do they understand the disease? Do they understand the progression? Do they have good knowledge of some of the unique challenges: changes in communication, dementia-related behaviors, wandering, home safety and driving?”
— Marie Clouqueur
How to find the right Alzeheimer’s care consultant for your needs
There are different ways you can go about finding an Alzheimer’s care consultant, including utilizing the medical provider who made the diagnosis, local senior centers, adult day health programs or memory care facilities, says Clouqueur. This word-of-mouth method can be an efficient way to find help.
Once you’ve found someone, experts agree that you should inquire about their experience with Alzheimer’s. As mentioned earlier, care consultants may have varying degrees and types of education. And “because Alzheimer’s has very unique challenges, [it’s important to] make sure that the professionals are trained and have an understanding around Alzheimer’s and dementia,” says Clouqueur. “Do they understand the disease? Do they understand the progression? Do they have good knowledge of some of the unique challenges: changes in communication, dementia-related behaviors, wandering, home safety and driving?”
Thompson adds that some providers will offer in-person support and assistance, while others may only be available virtually or via phone. That said, it’s important for families to discuss what they prefer. Additionally, she advises that it’s perfectly normal and appropriate to shop around and interview multiple potential caregivers to find the right fit.
And if an Alzheimer’s care consultant (or dementia care navigator through the GUIDE program) is not available in your community, Moreno recommends calling or otherwise reaching out to the Alzheimer’s Association, which can connect seniors and family caregivers to resources via their community resource finder, which has thousands of resources for home care, home health, hospice, respite, education and support services.
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The bottom line on hiring an Alzheimer’s care consultant
There’s no right or wrong time for hiring an Alzheimer’s care consultant, says Thompson. However, what she hears most often from clients is that they wish they would have reached out sooner. She advises not waiting until overwhelm sets in or disaster strikes before seeking help. Alzheimer’s care consultants can assist with everything from big-picture issues like developing a care plan to everyday challenges like improving communication and navigating hygiene.
“A diagnosis of Alzheimer’s or dementia can be among the most difficult challenges of a person and family’s life, affecting people cognitively, emotionally, physically, relationally and spiritually,” says Clouqueur. “The weight of the experience invites — or even necessitates — people to cultivate and utilize networks of help, be it through natural support of family and community or through professional assistance.”
While there’s no getting around the tragedy of these conditions, admits Clouqueur, it is possible to hope for the consolation of relieving avoidable suffering, maintaining quality of life and dignity and preserving a sense of connection and care for one another — all by utilizing the resources that an Alzheimer’s care consultant can provide.
