Adult Foster Care for Cognitive Impairment: A Caregiver’s Guide
Cognitive decline impacts many Americans. According to the Centers for Disease Control, about one in ten adults over age 45 report worsening memory loss (or cognitive decline) and another one in four report caring for someone who has a cognitive impairment such as Alzheimer’s, dementia, or traumatic brain injury. As a home-based living option for adults, Adult Foster Care (AFC) can provide an alternative to institutional care for people who can no longer live independently due to neurological and cognitive disorders, but don’t need or can’t afford nursing home care. In this article we explain the following topics:
- Types of Cognitive Impairment, including
- Benefits Adult Foster Care & Cognitive Impairment
- Caregiver’s Guide to Cognitive Impairment, with tips on
Types of cognitive impairment
Cognitive impairment covers a wide range of conditions. Below are some categories of cognitive decline and conditions that can lead to this life-altering set of symptoms.
Mild Cognitive Impairment (MCI)
When changes in memory or another mental ability affect memory, planning, following instructions or making decisions, but aren’t severe enough to be diagnosed as dementia, it may point to mild cognitive impairment (MCI). As noted by the Mayo Clinic, while these symptoms may be worrisome, daily activities aren’t impacted and people with MCI can still take care of themselves on their own. But friends or loved ones with this condition need to be closely monitored. MCI indicates mental ability that declines over time, so if symptoms worsen it can develop into full dementia.
Dementia & Alzheimer’s
Dementia is not a single disease. It’s a general term used to describe a group of conditions that affect the brain and cause a decline in thinking, memory, and everyday functioning. According to the CDC, “dementias, like Alzheimer’s disease, start with mild memory loss and can lead to an inability to carry on conversations or respond to one’s environment.” In other words, dementia is a progressive loss of brain function that affects memory, reasoning, communication, and behavior enough to interfere with daily life. The condition is caused by diseases of the brain, such as Alzheimer’s disease, vascular dementia, Lewy body dementia, or others.
Someone living with dementia may experience:
- Memory problems: forgetting recent events, appointments, or conversations
- Confusion and disorientation: trouble understanding where they are, what day it is, or what is happening
- Difficulty with everyday tasks: managing medications, cooking, paying bills, or driving
- Communication challenges: struggling to find the right words or follow conversations
- Changes in mood or behavior: increased anxiety, irritability, suspicion, or withdrawal
- Difficulty with judgment: making unsafe or unusual decisions
Traumatic Brain Injury (TBI) & Stroke
Traumatic Brain Injury (TBI) is a brain injury caused by physical trauma that can change a person’s thinking, memory, behavior, and physical abilities. A stroke is sudden brain damage caused by a problem with blood flow in the brain, which can affect movement, speech, thinking, and memory. Both conditions occur suddenly and symptoms appear all-at-once instead of gradually.
Someone recovering from a traumatic brain injury may experience:
- Memory problems: difficulty remembering new information or recent events
- Trouble concentrating: shorter attention span or difficulty completing tasks
- Confusion or slowed thinking: taking longer to understand or respond
- Changes in mood or personality: irritability, frustration, anxiety, or depression
- Speech or communication challenges: trouble finding words or organizing thoughts
- Physical symptoms: headaches, dizziness, balance problems, fatigue, or sensitivity to light and noise
While victims of stroke may deal with:
- Weakness or paralysis: often on one side of the body
- Communication issues: difficulty speaking or understanding speech
- Trouble with cognition: problems with memory or thinking
- Balance issues: trouble walking or staying upright
- Vision problems: blurred or partial vision loss
- Mood or personality changes: becoming irritable, frustrated or depressed
Autism & Neurodevelopmental Disorders
Neurodevelopmental disorders are conditions where the brain develops differently, which can affect how a person learns, behaves, communicates, or functions in daily life. Caregivers often describe neurodevelopmental disorders as differences in how the brain develops and processes information, leading to unique learning and behavior patterns. Examples include autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), learning disabilities (like dyslexia), speech and language disorders and intellectual disabilities.
According to Verywell Mind, someone with a neurodevelopmental disorder might have the following issues:
- Learning challenges: demonstrating difficulty with reading, writing, math, or processing information
- Attention or focus issues: trouble staying on task or being easily distracted (e.g., ADHD)
- Speech or language delays: creating a barrier to understanding or expressing language
- Motor skill challenges: having trouble with coordination, balance, or fine motor tasks
- Behavior differences: impulsivity, difficulty regulating emotions, or trouble adapting to change
- Social challenges: struggling with interacting with others or understanding social expectations
A type of neurodevelopmental disorder, autism is a lifelong difference in how the brain works that can change communication, social interaction, behavior, and sensory experiences. According to the Centers for Disease Control, more than two percent of adults in the United States have autism. A person with autism may:
- Communicate differently: using fewer words, repeating phrases, or using alternative communication methods
- Have social differences: finding it hard to read facial expressions, body language, or social cues
- Prefer routines: feeling more comfortable with predictable schedules and strugglling with sudden changes
- Show repetitive behaviors: such as hand movements, repeating actions, or focusing on specific interests
- Experience sensory sensitivities: becoming overwhelmed by sounds, lights, textures, or touch
Adult Foster Care for Cognitive Disorders
Adult home care or adult foster care offers an alternative to residential care for recipients, or members who require supervision or physical help with bathing, hygiene, walking, transferring, eating, or dressing. A relative or loved provides the care, while receiving financial assistance through MassHealth and nursing support and guidance through organizations like Mass Care Link. Because of this unique set up adult foster care is able to provide multiple benefits over other types of care:
Freedom to live at home: Living at home allows members to stick to their routines and participate in their community. For adults with cognitive disorders, living in a familiar setting can help reduce confusion and ease anxiety.
Personalized care: Especially beneficial for those with evolving dementia such as Alzheimer’s disease, having a loved one or friend as a caregiver can allow closer monitoring of their condition’s progression while giving them a sense of comfort.
Lower cost: Costs less than nursing homes or assisted living facilities, and is often less expensive than in-home personal care services.
24-hour care: Individuals with moderate to severe dementia or another cognitive impairment often require special care, including supervision, specialized communication techniques, and management of difficult behavior. By living with their caregivers, Adult Foster Care members can receive care around the clock.
Safety monitoring: Caregivers are trained to manage behavioral shifts, prevent wandering with door alarms or ID bracelets, and identify home hazards.
Cognitive Stimulation: Activities such as puzzles, music, and structured routines are used to engage the mind and reduce the frustration of memory loss.
Care Planning: Specialized programs develop individualized plans that coordinate with neurologists and social workers.
Caregiver’s Guide for Dementia and Cognitive Impairment
Caring for someone with cognitive impairment can be challenging. As the Family Caregiver Alliance explains, “individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating for caregivers. These might include communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment, and wandering.”
But with the right planning, resources and support, home caregivers can provide a safe, structured, and stimulating environment, offering support for daily activities, medication management, and in some cases 24-hour monitoring. The National Institute on Aging notes that personalized care plans can play a key role, since they “prioritize safety through environmental modifications and improve quality of life through cognitive, social, and physical stimulation.”
Tips for taking care of someone cognitive impairment or dementia
By keeping in mind the preferences and limitations of the person in your care, you can create a safe, welcoming environment you can both share
Routine & Structure
People with dementia prefer routine to avoid confusion and feel comfortable and secure.
- Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
- Help the person write down to-do lists, appointments, and events in a notebook or calendar.
- Plan activities that the person enjoys and try to do them at the same time each day.
- Consider a system or reminders for helping those who must take medications regularly.
- Maintain consistent schedules for eating, sleeping, and activities to reduce confusion.
- Utilize labels, calendars, and familiar, simple surroundings to aid orientation.
Daily Living Assistance
Many people with neurological disorders and dementia will need help with their activities of daily living (bathing, dressing, grooming) and instrumental activities of daily living (meal preparation, housekeeping, medication management). But they may not yet be used to their inability to care for themselves on their own. You can help with the transition..
- Be gentle and respectful. Tell the person what you are going to do, step by step while you help them bathe or get dressed.
- When dressing or bathing, allow the person to do as much as possible.
- Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
- Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
Safety
Taking care of someone with dementia or cognitive decline means you have to view their environment in a new light, as full of potential dangers. Be on the lookout for potential dangers from:
- Fire hazards such as stoves, other appliances, cigarettes, lighters, and matches
- Sharp objects such as knives, razors, and sewing needles
- Poisons, medicines, hazardous household products
- Loose rugs, furniture, and cluttered pathways that could cause falls
- Inadequate lighting
- Water heater temperature
- Cars and vehicles
- Items outside that may cause falls, such as hoses, tools, gates, uneven pavement
- Loose clothing and foot wear
The help prevent harm from these and other risks, be sure to provide:
- Emergency exits, locks to secure the house, and, if necessary, door alarms or an identification bracelet and a current photo in case your loved one wanders
- Bathroom grab bars and grips, non-skid rugs, mats, paper cups rather than glass
- Supervision of food consumption to ensure proper nutrition, and to monitor intake of too much or too little food
- Emergency phone numbers and information
- Medication monitoring
Health and wellness
Alzheimers.gov, a branch of The National Institute on Aging, offers these tips for maintaining the wellbeing of the person in your care.
Use brain-stimulating activities (puzzles, music, gardening, reminiscence therapy) and encourage social interaction to maintain function.
- Consider different activities the person can do to stay active, such as household chores, cooking and baking, exercise, and gardening. Match the activity to what the person can do.
- Help get an activity started or join in to make the activity more fun. People with dementia may lack interest or initiative and can have trouble starting activities. But, if others do the planning, they may join in.
Build movement into the daily routine in fun and creative ways
- Add music to exercises or activities if it helps motivate the person. Dance to the music if possible
- Be realistic about how much activity can be done at one time. Several short “mini-workouts” may be best.
- Take a walk together each day. Exercise is good for caregivers, too!
Use the power of choice to encourage healthy eating
- Buy a variety of healthy foods, but consider food that is easy to prepare, such as premade salads and single portions.
- Give the person choices about what to eat, for example, “Would you like yogurt or cottage cheese?
- Avoid
Help avoid dehydration and malnutrition by
- Making water accessible throughout the day
- Prioritizing protein and fiber in meals
- Offering alternatives to plain water
Communication
Communicating with the person in your care can be difficult due to changing roles and responsibilities. According to Alzheimers.gov, the following tips can help:
- Offer reassurance and stay calm. Speak in a gentle, steady voice. Listen closely to their worries or frustrations, and acknowledge their feelings — especially if they seem upset, afraid, or angry.
- Support their independence. Allow them to make choices and maintain as much control over daily life as safely possible.
- Honor personal space. Approach respectfully and be mindful of physical boundaries to help them feel comfortable.
- Create balance in the day. Include quiet, restful moments along with simple, enjoyable activities.
- Surround them with familiar comforts. Keep cherished objects, photographs, and meaningful items visible to promote security and connection.
- Gently reintroduce yourself when needed. If they don’t recognize you, calmly say your name and relationship rather than asking, “Don’t you remember?”
- Encourage connection. Maintain back-and-forth conversation for as long as they’re able, giving them time to respond.
- Shift the focus if needed. If communication becomes difficult, redirect attention to a familiar activity like looking through a photo album or reading a favorite book together.
Self-care for the caregiver
According to the Family Caregiver Alliance, “caring for an individual with Alzheimerʼs disease or a related dementia can be challenging and, at times, overwhelming.” The organization recommends, caring for yourself, connecting with others, and recognizing the signs of frustration and burnout to take steps before your condition leads to health issues or lashing out at the person in your care.
Take care of yourself. Caregiving is stressful, particularly for those caring for someone with dementia. According to the Family Caregiver Alliance, caregivers are more likely than their noncaregiving peers to be at risk for depression, heart disease, high blood pressure and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor health.
Recognize the signs of frustration. If you can recognize the warning signs of frustration, you can intervene and adjust your mood before you lose control. Some of the common warning signs of frustration include:
- Shortness of breath
- Knot in the throat
- Stomach cramps
- Chest pains
- Headache
- Compulsive eating
- Excessive alcohol consumption
- Increased smoking
- Lack of patience
- Desire to strike out
Connect with others. Participating in a support group connects you with other caregivers who understand the challenges you’re facing. These groups offer meaningful social and emotional support, along with helpful information and practical guidance about local resources. They also create a safe, confidential space where caregivers can express frustrations, exchange ideas, and gain new insights and strategies for providing care. Mass Care Link offers support and community to help you face the challenges of caring for someone with dementia or cognitive decline.
Do you care for someone with cognitive impairment? You may be eligible for a monthly payment. Mass Care Link can help you receive the financial support you need plus provide training, community, medical expertise and more. Contact us today to find out if you qualify.