Caregiving for People with Dementia

Dementia refers to a group of diseases that cause abnormal changes in the brain, which can result in a loss of memory, language, problem-solving and other thinking abilities that are severe enough to impact one’s daily life. According to the Alzheimer’s Association, signs of dementia can look different for each person. However, many individuals with dementia display common symptoms such as problems with short-term memory, keeping track of a purse or wallet, paying bills, planning and preparing meals, remembering appointments and traveling out of the neighborhood.

At some point, people with dementia will require additional support with activities of daily living, such as bathing, getting dressed and preparing meals. In fact, according to the Centers of Disease Control and Prevention, 80 percent of people with Alzheimer’s disease, the most common form of dementia, and other related dementias are receiving care in their homes. According to Johns Hopkins Medicine, a caregiver is a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability. For those with dementia, the role of a caregiver can change as the disease progresses and the individual with dementia cognitively declines.

Role of the Caregiver

There are three main stages of dementia—early, middle, and late. During the stages of dementia an individual’s needs may change and require more assistance from their caregiver. Here is what caregivers can expect as their loved one moves through the stages of the disease.

Caregiving in Early-Stage Dementia

During the first phase of dementia, an individual will most likely be able to function independently and continue on with their daily activities such as driving, working, completing at-home tasks and maintaining their social life. Those caring for an individual in the early stages of dementia should prioritize maximizing independence for their loved one. The person living with dementia may need cues and reminders to help with their memory, but it’s important to focus on the person’s strengths to support their overall independence. Here are some ways caregivers can provide support to their loved one, according to the Alzheimer’s Association:

• Assist with keeping appointments organized
  • Provide support with remembering words and names, familiar places and people
  • Managing money and paying bills
  • Keeping track of medications
  • Help with planning or organizing
  • Coordinate transportation

Caregiving in Middle-Stage Dementia

An individual with dementia can stay in the middle stage for many years. During this period of time, they may need a greater level of support from their caregivers. According to the Alzheimer’s Association, those with middle-stage dementia may experience symptoms such as:

• Being forgetful of events and personal history
  • Experience changes in their mood and personality
  • Being unable to remember information about themselves, such as their address and telephone number or the high school or college they attended
  • Confusion about where they are and what day it is
  • Needing help with dressing and choosing clothing
  • Experiencing difficulty with controlling their bladder and bowels
  • Changes in sleep patterns
  • Increased tendency to wander and become lost

Caring for an individual with middle-stage dementia can be very emotionally and physically draining. During this period of time, changes in behavior can become a concern. Caregivers may see their loved one become more depressed, anxious and irritable. Oftentimes, these behaviors are linked to an unmet need. Over time, caregivers may be able to recognize what behaviors are signaling and provide the appropriate support.

Communication can become very difficult for someone with middle-stage dementia. Caregivers can make simple changes to help—such as speaking slowly in a gentle tone. Basic daily tasks also become challenging in middle stage dementia. Caregivers should encourage their loved one to do as much as they can independently, but be prepared to offer support when needed. This might include assistance with choosing appropriate clothing, bathing, toileting and preparing meals. According to the Alzheimer’s Association, these day-to-day tips can be useful:

• Use a calm voice when responding to repetition and questions
  • Respond to the emotion instead of specific questions. A person may need reassurance as opposed to an answer to a repeated question.
  • Use simple written reminders
  • If you notice any changes in your loved one, check in with their health care provider just to be safe.

Caregiving in Late-Stage Dementia

During the final stage of dementia, individuals may lose their ability to control movement, speech and respond to their environment. Significant personality changes may also arise and often requires around-the-clock care. Those with late-stage dementia will undergo changes in their physical abilities, which often include the ability to walk, sit, communicate and swallow. In addition, individuals can become very vulnerable to illness and infections. The main responsibility of a caregiver providing support to an individual in late-stage dementia is to make their loved one comfortable. Caregivers should focus on showing care and love through the senses. This can be done through:

• Playing your loved one’s favorite music
  • Reading or singing to your loved one
  • Looking at old photos
  • Rubbing feet and hands with scented lotion
  • Gently brushing hair
  • Sitting outside

During this phase of dementia, caregivers may require additional support, as the physical strain of caregiving can become intensive. Many caregivers seek support through residential care such as a hospice unit or nursing home.

Questions to Consider Before Caregiving

Deciding to become a caregiver to a loved one is not something to be taken lightly. While undoubtedly rewarding, caregiving can present a huge strain on your life and your family’s life. Before committing, it’s important to go through these questions ahead of making the final decision:

• Am I physically able to provide the needed assistance? (Could I continue doing this work for weeks? Months? Years? Do I have physical limitations for the work involved?)
• Am I prepared to perform intimate caregiving chores like bathing and helping with toileting?
• Am I able to keep from getting upset and angry? (Am I able to stay calm and treat family members with patience and kindness even when I feel tired and overworked with the responsibilities of being a caregiver?)
• Can I free my schedule to be available when needed?
• Can I afford to reduce or stop working? (Do I need to continue to work to meet my family’s and my current or future financial needs?)
• Am I willing to reduce or neglect other obligations in order to give the care needed? If there are other people that depend on me (children, etc.), can I find alternative care for them to free up my time to take care of my loved one?
• Are you confident that other family relationships (e.g., with your spouse) will not be negatively affected by the unduly stress of caregiving?
• Do I have a list of contacts to ask for help when I need a break? (Am I willing to ask for help if I need it?
• How will I protect myself from getting so involved that I never take a break or get help?
• Would I be willing to purchase care to supplement the care I can give? (Do I have the financial resources to purchase supplemental care?)
• Would I be willing to pay someone to help me provide the care that is needed?
• Do the people around me support me in my decision? (Are they willing to share in some of the responsibilities?)

Supporting Caregivers at Maplewood Senior Living

At Maplewood Senior Living, we know how important the work of caregivers is to older adults, especially for those with dementia. Our communities offer caregiver support groups and respite care for dementia patients to provide an opportunity for caregivers to rest and rejuvenate. To learn more about our communities and to schedule a tour, please contact us.