“I can’t keep up.” “They’re not safe at home.” “They keep ending up in the ER.”
When a person is living with dementia, their needs are constantly changing. And new behaviors — restlessness, confusion, refusal to shower — often require a different kind of support.
But what are the available options, and when is the right time to start?
Lisa Wasson, RN, CHPN, CMDCP, HopeHealth’s community nurse educator, has spent years helping families navigate dementia care. Here, she shares resources for each stage of the journey.
> Connect with HopeHealth Circle of Love dementia care
Early to moderate stage: When caregivers start to feel the weight
Because early dementia is often mistaken for typical aging, many people aren’t diagnosed until the disease has reached its moderate stage. By then, their behavior may already have shifted. Their safety awareness has likely begun slipping, and communicating is more of a challenge. In many cases, they’re still quite active, but struggle to stay focused. When they need or want something, it feels urgent.
For many families, this is when conversations about outside support begin.
“One of the first signs that it’s time to think about outside resources,” Lisa says, “is when, as a caregiver, you have the thought that, ‘I can’t keep up with my loved one.’”
The resources below are designed for this stage, and many can be combined or scaled up as needs change.
1. Adult day health
Adult day programs for dementia are usually open during standard business hours, with some offering Saturday options. Most are flexible about how many days and hours your loved one attends — whether you drop them off for a few half-days or they attend five or six full days each week. While they’re there, dementia-trained staff help them with personal care, meals, medications, and activities in a safe, supervised setting.
When to consider:
- Your loved one cannot safely be left alone, but you can’t be there every hour
- Your loved one needs help with personal care that you’re struggling to provide — whether because of physical limitations, time, or other demands
Beyond supervision and personal care, these programs can help your loved one stay socially engaged and connected to a community.
“As much as people living with dementia tend to isolate, socialization is so important for cognitive health,” says Lisa.
2. Assisted living
Assisted living facilities are home-like settings where residents handle most daily activities themselves, but have the option of receiving help with medications, personal care and certain routines. Meals are often served in a communal dining hall, and most communities offer regular social activities. Staff are available during the daytime.
When to consider:
- Your loved one’s care needs have grown beyond what you can realistically provide at home
- Your loved one would benefit from a structured, social environment with consistent staff and routines
Because assisted living requires a person to maintain some independence, couples sometimes choose to move in together when one partner has become the caregiver. It’s also important to keep in mind: Many facilities only have a nurse on staff during daytime hours.
“Assisted living is not a nursing home. By regulation, a nurse is not required on-site overnight,” says Lisa. “That matters if your loved one may need clinical attention overnight.”
3. Palliative care
As a medical specialty, palliative care focuses on relieving the symptoms and challenges that often accompany a person’s serious illness. It also supports their caregiver and family. It’s available at any stage of dementia and can be provided alongside other treatments, as an extra layer of care.
When to consider:
- Your loved one is experiencing challenging symptoms
- ER visits are happening repeatedly
- Your family needs support with advance care planning
“If your loved one has unrelieved symptoms — pain, difficulty with a modified diet, anxiety — palliative care could be just the right support, for them and for you,” says Lisa.
> Read: What’s the difference between hospice & palliative care?
4. Home care
Home care refers to short-term nursing and therapy services, provided wherever a patient is living. Often, this care is prescribed after a health crisis like a fall or hospitalization. It’s usually directed at a specific goal — for example, helping a patient regain strength and balance — and concludes after a number of weeks.
When to consider:
- Your loved one has had a health crisis and needs monitoring, follow-up care, or help rebuilding strength or skills
- You need help determining whether it’s safe for your loved one to continue living where they are
Home care comes in many forms:
“Does your loved one need physical therapy to rebuild strength? Occupational therapy to regain as much independence as possible with self-care? Speech therapy to support safe swallowing? Those are all reasons to request an evaluation for home care,” says Lisa.
Late stage: When around-the-clock support becomes necessary
In late-stage dementia, a person’s verbal communication has often stopped, or their words no longer connect to meaning. Their reflexes are slower, which means they’re at a greater risk for falls. Because they’re no longer able to verbally ask for help, they may express any unmet needs through distress: crying, yelling, pulling at their clothing, climbing out of bed.
“This is the stage when around-the-clock care becomes the right level of support,” says Lisa.
5. Long-term care
Long-term care facilities, also known as nursing homes or skilled nursing homes, are staffed 24/7 with nurses, aides and physicians on call. They offer continuous monitoring and full assistance with daily needs.
When to consider:
- Your loved one needs moderate to full assistance with bathing, dressing, toileting and transfers
- They have difficulty swallowing, requiring support from trained staff
- They’re at risk for falls, wandering or unsafe appliance use that can’t be managed at home
- Disrupted sleep cycles are exhausting the caregiver night after night
Unlike assisted living, long-term care facilities have nursing staff on-site around the clock: “Someone is always awake and watching over your loved one,” says Lisa.
6. Hospice care
End-of-life care focuses on comfort, dignity and support in the final months of a person’s life. When a person enters hospice, they stop taking any disease-modifying medications. Their care shifts entirely to relieving their symptoms, and to offering practical, emotional and spiritual support for the whole family.
When to consider:
- The focus of care has shifted from slowing the disease to maximizing quality of life
Because dementia progresses differently for every person, some families assume hospice is only appropriate in their loved one’s final days or weeks of life. In reality, it’s often available much sooner.
“One of the hardest parts of dementia is that families often don’t know what to expect next,” says Lisa. “Hospice can provide support much earlier than people realize — not just for the person living with dementia, but for everyone caring for them.”
> Read: How do hospice social workers help people with dementia?
A framework, not a formula
Not every family will need all these resources, or in any particular order. They’re available for you to draw on as your loved one’s needs evolve.
Knowing what support to ask for — and when — is its own kind of care.
“By the time many families reach this stage, they’ve been carrying an enormous amount on their own,” says Lisa. “Having the right support — and people to guide you through what comes next — can make families feel far less alone.”