Caring for Someone with Alzheimer's Disease

Tuesday, 02 August, 2016

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Alzheimer's disease is called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. An effective treatment will address the needs of the entire family. Caregivers must focus on their own needs, take time for their own health and get support and respite from caregiving regularly to be able to sustain their well-being during this caregiving journey. Emotional and practical support, counseling, resource information and educational programs about Alzheimer's disease all help a caregiver provide the best possible care for a loved one.

Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. As stated by one caregiver, "The care you give to yourself is the care you give to your loved one." It is often hard to see beyond the care tasks that await you each morning.

Through special training, our caregivers know how to manage challenging behaviors, improve communication skills and keep the person with Alzheimer's safe. The role of the caregiver changes over time as the needs of the person with Alzheimer's disease change.

Symptoms at Early-Stage Alzheimer's

  • Trouble remembering recent events or conversations, the month or day of the week
  • Asking the same question over and over or repeating stories
  • Loss of ability to manage finances, making mistakes in writing checks
  • Withdrawal from social situations and general apathy; trouble initiating an activity
  • Cooking and shopping become more difficult; pans may be left to burn on the stove, and food may be forgotten in the refrigerator
  • Poor judgment - difficulty making wise decisions; may be easily swayed by others
  • Tendency to lose things or forget where they are when they are "put away carefully"
  • May become disoriented in familiar surroundings or get lost easily
  • Driving ability is compromised; unfamiliar driving routes or driving in an unfamiliar place will prove difficult
  • Denial that anything is wrong

Early Stage Care-giving

During the early stage, both the caregiver and the individual with AD will want to take time to adjust to the diagnosis and make plans for the future:

  • Emotional Support: A diagnosis of AD can be a heart-wrenching experience for both the person diagnosed and the caregiver. The person with AD may not remember or may not admit to having the disease or ever being told they had Alzheimer's. Trying to convince them otherwise is fruitless and frustrating for the caregiver. The caregiver needs to get appropriate emotional support through counseling, a support group or other family members. The goal is to establish a system of emotional support that will grow and change with you as your caregiving role and the emotional challenges change. Depression is common in caregivers of people with AD and should be addressed.

  • Family Roles: As the disease progresses, it will be harder for the person with AD to fulfill the roles they have typically played in the family. For example, if he or she was the only driver in the family, it will be important for family members to find alternative means of transportation (e.g., learning how to drive, recruiting volunteer drivers from among family and friends, using public transportation or paratransit). If the person with AD customarily prepared all of the meals, now is the time for the caregiver to begin learning how to cook. If the person with AD was in charge of household finances, someone else will need to assume this role. Focusing on these issues early will allow the person with AD to help the caregiver prepare for the future.

  • Finances: AD can be a costly disease. It is important to begin mapping out strategies for meeting the increasing financial demands placed on the family as the disease progresses. Financial planning should include reviewing your insurance coverage, e.g., health, disability, long-term care. Be aware that Medicare does not pay for long-term care or custodial care. Medicaid, the safety net for those living on a limited income, does provide coverage for those who qualify. Health insurance counseling is available free to seniors. To locate help in your community, call the Eldercare Locator at (800) 677-1116 or HICAP at (800) 434-0222.

  • Legal: Eventually the person with AD will need help making medical decisions, financial decisions and in making all sorts of important personal decisions such as who will provide for their care. Legal documents should be completed as early as possible in the disease process, even prior to a diagnosis. Waiting too long may result in the person no longer being deemed capable of signing legal documents. A Power of Attorney for Finances and Power of Attorney for Healthcare (Advanced Health Care Directive) can ensure that the person with AD is cared for by trusted family members or friends. Without these documents, caregivers may have to petition for conservatorship through court proceedings in order to get the right to make decisions on behalf of the person with AD. The family may also lose access to bank accounts if a member is not co-named on the account(s). Clear legal documentation can help prevent someone from attempting to take advantage of or lay claim to financial resources for their personal gain. Free and low-cost legal services are available to seniors. See the resource section of this fact sheet for organizations that can help with legal issues.

Middle-Stage Alzheimer's

  • Anger, suspicion, overreacting, and paranoia (e.g., believing that family members are stealing money or a spouse is having an affair)
  • More repetition of questions or statements
  • Wandering or sun-downing (i.e., restlessness or agitation in the late afternoon and evenings)
  • Fear of bathing
  • Eating problems, table manners decline
  • Involuntary leakage of urine (incontinence) or having urine "accidents"
  • Hoarding belongings, especially paper
  • Inappropriate sexual behavior
  • Violent behavior - hitting, shouting, arming themselves for protection
  • Will go from needing help choosing clothes and remembering to change clothes to needing help getting dressed
  • Will progress from needing reminders regarding personal care to needing help bathing, taking medication, brushing teeth, shaving, brushing hair, toileting, etc?
  • Increased difficulty with verbal expression and comprehension, particularly when trying to name items
  • Spatial problems (e.g., having trouble finding their way, sometimes even at home)
  • Loss of reading, writing and arithmetic abilities; difficulty following the story line of a television show
  • Loss of coordination often leading to shuffling feet or gait problems
  • Will need care or supervision; possibly for 24 hours a day
  • May lose the ability to recognize family and friends at times

Middle-Stage Care-giving

  • Emotional Support: People caring for loved ones with AD frequently feel isolated, and feelings of grief and loss surface as the person they are caring for changes. Getting emotional support from professionals, family, friends and/or a support group as well as taking periodic breaks from the responsibilities of caregiving is crucial to the mental and physical health of caregivers. Be sure to speak to your physician if you feel depressed or anxious.

  • Safety: Creating a safe and comfortable environment is important. An occupational therapist or physical therapist can provide advice and help in making the home safer for both the caregiver and care recipient. Ask your physician, the local Alzheimer's Association or the Area Agency on Aging for a referral to a professional who is experienced in home modification and assistive devices. For people with AD who are at risk of becoming lost outside of their home, the local police should be advised, and the person should register with the Alzheimer's Association's Safe Return program.

  • Medical Care: The person with AD will need ongoing medical care both for AD and for any other health problems that might arise. Over time the caregiver will be depended upon to help provide the status update to medical staff. Make sure there is a release of information noted in the medical chart of the patient so that the physician can speak freely with you. It is important to develop a positive relationship with the physician(s) and other health care professionals. You will need them to understand your role as the caregiver, listen to your input and work with you as a team member in providing appropriate medical care.

Late-Stage Alzheimer's

  • Loss of ability to communicate
  • Inability to recognize people, places and objects
  • Requires full assistance with all personal care activities
  • Loses ability to walk
  • Loses ability to smile
  • Muscles may become contracted
  • May lose ability to swallow
  • Seizures may occur
  • Weight loss
  • Majority of time spent sleeping
  • May exhibit a need to suck on items
  • Incontinence of both bowel and bladder

Late-Stage Care-giving

  • Placement: Families caring for a loved one with end-stage Alzheimer's should give thoughtful consideration to placement in a skilled nursing facility or dementia care facility, where adequate management and supervision can be provided.

  • Hospice: Hospice services are designed to support individuals at the end of life. Services may include support groups, visiting nurses, pain management and home care. Hospice services are usually arranged through the treating physician, and are usually not available until the physician anticipates that a person has less than six months to live. Several organizations specialize in helping families deal with the challenges involved in end-of-life care.