Key Takeaways
Picture this: You’re a superhero, cape and all, dedicated to the well-being of your loved one with dementia. But even superheroes need a break, right?
So, when do you call in the reinforcements? When does your loved one need 24-hour care?
Well, it’s not as simple as waiting for the Bat-Signal. Dementia is a tricky villain, with its progression varying from person to person.
But don’t worry, this article is your trusty sidekick, ready to guide you through the signs that it might be time to consider round-the-clock care.
Dementia patients typically need 24-hour care when their symptoms become severe enough to impact daily functioning significantly. This can include increased memory loss, confusion, difficulty with daily tasks, changes in behavior, and increased medical needs. However, the progression of dementia varies, so the timing of this need can differ for each individual.
Dementia affects people in different ways and can be overwhelming for families, friends and caregivers. Approximately 50 million people live with dementia worldwide. It is projected that by 2050 there will be over 150 million persons living with dementia, with 60% residing in low and middle-income countries.
Pan American Health Organization
As an Occupational Therapist (OT), I treated thousands of patients with dementia. Some in rehab facilities and some at home.
My experience and training taught me what signs to look for to assess if my patient needed 24-hour care but of course, the challenge was always convincing not only my patient but their family that it was time.
My personal feelings are that the time for someone with dementia to begin receiving full time care is when safety becomes an issue.
Adults with dementia have a higher risk of injury and as a result, require more attentive care.
| People with Dementia | People without Dementia | Hazard Ratio (HR) | Significance (p-value) | |
|---|---|---|---|---|
| Injury-related hospitalization | 19.92% | 18.86% | 1.070 | <0.001 |
| Cause of Injury: | ||||
| Suffocation | Higher risk | – | 2.301 | <0.001 |
| Accidental drug poisoning | Higher risk | – | 1.485 | <0.001 |
| Falls | Higher risk | – | 1.076 | <0.001 |
| Suicide or self-inflicted injury | Lower risk | – | 0.670 | <0.001 |
| Traffic accident | Lower risk | – | 0.510 | <0.001 |
| Subgroup Analysis (Cause of Injury): | ||||
| Homicide or abuse (Vascular dementia) | Higher risk | – | 2.079 | <0.001 |
| Homicide or abuse (Alzheimer’s disease) | Higher risk | – | 1.156 | <0.001 |
| Homicide or abuse (Other dementia) | Higher risk | – | 1.421 | <0.001 |
| Risk Factors for Overall Injury: | ||||
| Dementia diagnosis | Yes | – | – | – |
| Female gender | Yes | – | – | – |
| Age 65–74 years | Yes | – | – | – |
| Medical attention for injury (past year) | Yes | – | – | – |
Understanding Dementia
Dementia is a term that describes a group of symptoms affecting cognitive function, including memory loss, difficulty with thinking and problem-solving, and challenges with coordination and motor functions.
Dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person’s daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change.
National Institutes of Health
It’s not a single disease, but rather a condition that manifests as a result of various diseases or injuries that affect the brain.
Alzheimer’s disease is the most common cause of dementia, accounting for 60-80% of cases.
In the early stages of the disease, dementia patients may experience mild memory loss and slight confusion.
They may forget recent events or conversations, have trouble finding the right words, or lose their way in familiar places.
These symptoms can be subtle and are often mistaken for normal signs of aging.
As dementia progresses, memory loss and confusion become more pronounced. Patients may forget the names of family members or what they look like.
They may struggle with daily tasks, such as dressing, cooking, and taking care of personal hygiene.
They may also experience changes in personality and behavior, such as becoming aggressive or suspicious, which can be distressing for family caregivers.
Dementia is a progressive disease, which means the symptoms gradually get worse over time. However, the progression varies widely from person to person.
Some people may remain relatively stable for years, while others may experience a rapid decline in cognitive function.
Understanding dementia and its progression is crucial for family caregivers. It helps you know what to expect and how to plan for the future.
It also helps you understand the changes in your loved one’s behavior and abilities, which can be challenging to cope with.
Remember, dementia is a disease, and the symptoms your loved one is experiencing are not their fault. They are the result of changes in the brain caused by the disease.
My specialty, as an OT, was working with neurologically impaired adults. As a result, I learned a lot about how an injury to the brain can manifest itself.
The Progression Of Dementia
In the early stages of dementia, patients may still be able to live in their own home with some support from family members or professional caregivers.
They may need help with medication management, but they can often still participate in daily activities and social events.
However, as the disease progresses into the late stages of Alzheimer’s or other forms of dementia, the care needs of the patient increase.
They may experience significant memory loss, have difficulty with day-to-day activities, and may even become a safety concern due to wandering or falls.
| Stage | Description |
|---|---|
| Preclinical stage | No visible symptoms. Brain changes may be present. |
| Mild cognitive impairment (MCI) | Mild memory loss and cognitive decline. |
| Early-stage dementia | Noticeable cognitive and memory problems. |
| Moderate-stage dementia | Difficulty with daily activities and increased confusion. |
| Severe-stage dementia | Profound memory loss, inability to communicate, and total dependence on others. |
Do All Dementia Patients Need 24-Hour Care?
Not all dementia patients need 24-hour care, especially in the early stages of the disease.
The need for round-the-clock care typically arises as the disease progresses to more advanced stages.
In the early stages of dementia, individuals may still be able to perform many of their daily activities independently, though they might need reminders or assistance with more complex tasks.
They may live in their own home, possibly with support from family members, professional caregivers, or community services.
As dementia progresses, the individual’s abilities continue to decline. They may start to have difficulty with basic tasks such as dressing, eating, and personal hygiene.
They may also become more confused or disoriented, even in familiar environments, and may start to wander or become lost.
In these more advanced stages, the individual may require more constant supervision and assistance, up to and including 24-hour care.
However, the progression of dementia varies greatly from person to person.
Some people may remain in the early stages of the disease for many years, while others may progress more rapidly to more severe stages.
The decision to move to 24-hour care is usually based on a combination of the person’s physical and cognitive abilities, their safety, and the ability of their caregivers to meet their increasing needs.
It’s also important to note that 24-hour care doesn’t necessarily mean moving into a nursing home or other care facility.
Depending on the person’s needs and resources, 24-hour care can be provided in a variety of settings, including the person’s own home.
This can involve family members, professional caregivers, or a combination of both.
In conclusion, while not all dementia patients will need 24-hour care, many will as the disease progresses.
Regular assessments by healthcare professionals can help determine when this level of care becomes necessary.
Signs That 24-Hour Care May Be Needed
Recognizing when a dementia patient needs 24-hour care is crucial for their safety and well-being.
Here are some key signs that it might be time to consider round-the-clock care:
Increased Memory Loss and Confusion: As dementia progresses, memory loss and confusion can become more severe. The person may forget familiar faces, struggle to remember recent events, or become disoriented even in familiar places.
They may also have difficulty understanding what’s real and what’s not, leading to delusions or hallucinations.
Difficulty with Daily Tasks and Self-Care: Dementia can make it challenging to perform daily tasks, such as dressing, bathing, eating, and taking medications. If your loved one is struggling with these activities of daily living, they may need 24-hour support.
Changes in Behavior and Personality: Dementia can cause significant changes in behavior and personality. Your loved one may become agitated, aggressive, or suspicious. They may also experience mood swings, depression, or anxiety.
These changes can be distressing for both the person with dementia and their caregivers.
Increased Risk of Falls or Accidents: Dementia can affect coordination and balance, increasing the risk of falls. It can also lead to unsafe behaviors, such as leaving the stove on or wandering outside alone.
If your loved one has had frequent falls or near-misses, it may be time for 24-hour care.
Wandering and Getting Lost: Many people with dementia have a tendency to wander, which can be dangerous if they get lost or encounter hazards. If your loved one has started to wander, 24-hour supervision can ensure their safety.
Difficulty with Communication: Dementia can make it hard for a person to express their thoughts and understand others. If your loved one is having trouble communicating, they may need more support.
Increased Medical Needs: As dementia progresses, other health issues often arise. These can include difficulty swallowing, incontinence, and other chronic conditions.
If your loved one’s medical needs have increased to the point where they require regular medical care, 24-hour support may be necessary.
Each person with dementia is unique, and the signs that 24-hour care is needed can vary.
It’s important to regularly assess your loved one’s abilities and needs, and to seek advice from healthcare professionals when needed.
The Role Of The Family Caregiver
Family caregivers play a crucial role in the care of dementia patients. However, the emotional and physical toll of caregiving can be significant.
Respite care, such as adult day care centers or short breaks provided by other family members or professional caregivers, can provide some relief.
| Responsibilities | Description |
|---|---|
| Personal care | Assisting with activities of daily living (ADLs) such as bathing, dressing, grooming, and toileting. |
| Medication management | Ensuring proper administration of medications, organizing pillboxes, and tracking medication schedules. |
| Safety supervision | Monitoring the person’s safety to prevent accidents, falls, or wandering. Installing safety measures at home. |
| Cognitive support | Engaging in cognitive exercises, reminiscence therapy, and stimulating activities to maintain cognitive function. |
| Emotional support | Providing reassurance, comfort, and companionship. Understanding and empathizing with the person’s emotions and frustrations. |
| Communication | Using clear and simple language, active listening, and non-verbal cues to effectively communicate with the person. |
| Meal planning and preparation | Planning nutritious meals, accommodating dietary needs, and assisting with eating if necessary. |
| Transportation | Arranging and providing transportation for medical appointments, social outings, and other necessary trips. |
| Financial management | Assisting with financial matters, including bill payment, budgeting, and ensuring protection against financial exploitation. |
| Advocacy | Acting as an advocate for the person with dementia, ensuring their rights, needs, and preferences are respected in healthcare and social settings. |
| Care coordination | Coordinating medical appointments, managing communication between healthcare professionals, and organizing support services. |
| Self-care support | Taking care of one’s own physical and mental well-being through regular breaks, seeking support from other caregivers, and accessing respite care. |
Note: The role of a family caregiver for someone with dementia can be multifaceted and demanding.
It is essential for caregivers to prioritize their own self-care and seek assistance when needed to prevent burnout and maintain their well-being.
However, there comes a point when 24-hour care becomes necessary.
This is often when the caregiver’s own physical health or emotional needs are at risk, or when the patient’s care needs exceed what the caregiver can provide.
Options For 24-Hour Care
There are multiple options available for seniors with dementia who require 24-hour care.
- In-home care: Hiring a professional caregiver or nursing aide to provide care within the senior’s own home. This can range from a few hours a day to full-time live-in care.
- Assisted living facilities: These facilities offer round-the-clock care and support in a residential setting. Seniors with dementia can receive assistance with daily activities, medication management, meals, and social engagement.
- Memory care units: Specialized units within assisted living or nursing homes that cater specifically to individuals with dementia. These units provide a secure environment and tailored care programs to address the unique needs of seniors with dementia.
- Nursing homes: Skilled nursing facilities that provide comprehensive 24-hour care for seniors with dementia. They have medical staff available to manage complex health conditions and offer various services, including rehabilitation.
- Adult day programs: Daycare programs designed for seniors with dementia, where they can receive care, engage in activities, and socialize during daytime hours. This option can provide respite for family caregivers while ensuring their loved one receives proper care and stimulation.
- In-home nursing care: For seniors who prefer to remain in their own homes, skilled nursing professionals can provide round-the-clock care, including medical assistance, monitoring, and support.
- Hospice care: In cases where the senior’s dementia has progressed significantly and their health is declining, hospice care can provide comprehensive 24-hour support, focusing on comfort and quality of life.
It’s important to assess the specific needs of the individual with dementia and consider factors such as their level of cognitive impairment, physical health, safety concerns, and the availability of support from family members.
Consulting with healthcare professionals and exploring local resources can help determine the most suitable option for 24-hour care.
Making The Transition To 24-Hour Care
Transitioning to 24-hour care for a patient with dementia can be a significant change for both the patient and their family members.
Here are some considerations and suggestions to help facilitate a smoother transition:
- Open and honest communication: It is crucial to have open discussions with the patient and family members about the need for 24-hour care. Explain the reasons for the transition, emphasizing the importance of safety, specialized care, and the well-being of the patient.
- Involving the patient: Whenever possible, involve the patient in decision-making and allow them to express their preferences and concerns. This can help them feel more empowered and maintain a sense of control over their life.
- Planning and gradual transition: It may be helpful to gradually introduce the concept of 24-hour care by starting with shorter periods of professional caregiving or respite care. This can help the patient and family adjust to the idea and build trust with the caregivers.
- Selecting the right care setting: Explore different care options, such as in-home care, assisted living facilities, memory care units, or nursing homes. Consider the patient’s needs, safety requirements, available support, and the preferences of both the patient and family members.
- Facility visits and assessments: If considering a care facility, visit different facilities together with the patient and family members. Assess the environment, staff qualifications, and available services, and engage in conversations with staff and current residents if possible. This can help ease concerns and make an informed decision.
- Care plan development: Work closely with the chosen care facility or professional caregivers to develop a comprehensive care plan tailored to the patient’s needs. This plan should outline the patient’s preferences, medical requirements, daily routines, and specific care instructions.
- Family involvement and support: Maintain active involvement in the patient’s care, even with professional caregivers present. Regularly communicate with the care team, attend care conferences, and participate in decision-making. This helps maintain a sense of connection and ensures the patient’s needs are met.
- Emotional support: Transitioning to 24-hour care can be emotionally challenging for both the patient and family members. Seek support from support groups, counseling services, or organizations specializing in dementia care. Sharing experiences and feelings with others who have gone through similar transitions can provide comfort and guidance.
- Patience and adaptation: Understand that adjusting to 24-hour care is a process that may take time. It’s normal for both the patient and family members to experience a range of emotions. Patience, flexibility, and open communication are key to navigating this transition successfully.
Remember that every individual and family situation is unique, so it’s important to tailor the transition process to meet their specific needs.
Seeking guidance from healthcare professionals and care providers can offer valuable insights and assistance throughout the transition.
Resources
These books may help you not only to understand dementia but to prepare for the care of someone with dementia.
Dementia Home Care
Dementia Care Companion
Creative Care
Understanding The Changing Brain
Final Thoughts
In the United States alone, there are an estimated 157,800 new dementia patients each year. As dementia is a progressive condition, many of these patients will eventually require 24-hour care.
Recognizing the signs that full-time care is needed can give family caregivers peace of mind, knowing they are doing what’s best for their loved ones.
Whether it’s 24-hour in-home caregivers, an assisted living facility, or a memory care facility, there are options available to ensure your loved one receives the quality care they need. Remember, you’re not alone.
There are support groups, social workers, and professional caregivers ready to help you navigate this next step in your loved one’s dementia journey.
Remember, it’s not about the disease, it’s about the person.
Even in the late stages of Alzheimer’s, your loved one can still enjoy the quality of life, social interaction, and the comfort of knowing they are cared for and loved.
  |   |   |
