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Challenges and Solutions of Caregiving

  • Published: 2012-06-08 (Rev. 2016-04-08) - Contact: Wendy Taormina-Weiss at Disabled World
  • Synopsis: Providing care for others can be stressful and has the potential to contribute to depression and serious illness.

Definition: Caregiving

Caregiving - (Carer - UK, NZ, Australian) - Can be defined as 1 - An individual, such as a parent, foster parent, or head of a household, who attends to the needs of a child or dependent adult. 2 - An individual, such as a physician, nurse, or social worker, who assists in the identification, prevention, or treatment of an illness or disability.

Main Document

"Many times, relatives who live out-of-town also call a person's doctor to express their concerns about the treatment their loved one is receiving."

A caregiver is a person who provides assistance to someone who needs care. Caregiving may involve the care of a spouse who has experienced a stroke, a mother-in-law with Alzheimer's disease, a child with muscular dystrophy, or a grandfather with cancer. The majority of caregivers are unpaid, are family members or friends, and provide care for loved ones or friends on a full or part-time basis. Approximately 80% of caregivers provide assistance to others seven days a week. The care they provide commonly involves both personal assistance and household chores.

Providing care for others can be stressful and has the potential to contribute to depression and serious illness. Studies have demonstrated that around 16% or caregivers report their health has worsened since they became caregivers, with approximately half of those who care for a person with Alzheimer's disease developing psychological distress. Caregiving may result in additional financial burdens; approximately 40% of caregivers incur new financial expenses related to services, products, and activities. One estimate states that 26% of caregivers spend around 10% of their monthly income on caregiving costs.

Along with performing household chores, providing transportation, doing the shopping, and performing personal care - 37% of caregivers are also involved in administering injections and medications, as well as providing medical treatments to the person they are providing care for. Approximately 70% of caregivers have reported the need to ask for advice with medical treatments and medications; usually from a doctor.

While they speak with a doctor about the person they are providing care for and their health, caregivers do not talk about their own health. Caregivers are a population at risk of morbidity and mortality. The fact remains they often times ignore their own health risks.

Relying on family support networks is a major part of national health policy.

Demographic trends and changes in the health care delivery system suggest an increase in the reliance on caregivers in the future. An estimated 80% of community care provided by family caregivers is valued at nearly $200 billion each year.

Caregivers deal with inevitable burdens and stresses. Caregiving is a potential occupational hazard with demands that place caregivers at risk for:

  • Abuse
  • Neglect
  • Burnout
  • Mortality
  • Morbidity
  • Depression
  • Self-neglect
  • Chronic stress
  • Family conflicts
  • Excessive alcohol or drug use
  • Premature institutionalization of the patient
  • Failure to meet their own emotional and personal needs

The Doctor/Caregiver Partnership

Primary care doctors have the ability to provide a strong model to guide relationships with caregivers. An effective relationship model is one that acknowledges the key role of the primary care doctor while recognizing that caregivers and the people they care for form independent units. The model also takes into consideration the caregivers as a partner with the doctor in the care of the person. The doctor demonstrates concern for and carries out assessments on a periodic basis of the caregiver as well as the person they are caring for, validating the role of the caregiver.

Where family members with dementia are concerned, caregivers rely on doctors to provide information about dementia symptom management and the availability of support services. Doctors may be proactive, asking caregivers how they are coping while linking them with resources, something that can help to improve a caregiver's belief in their own capabilities while leading to more enduring and successful care. Doctors have the ability to work in a collaborative manner with social workers and nurses who are knowledgeable about symptoms and behavioral management strategies.

Many times, relatives who live out-of-town also call a person's doctor to express their concerns about the treatment their loved one is receiving. Families that are in conflict need to receive the same information on the person's diagnosis and treatment plan from the doctor. A referral to a support group is something that is recommended for every caregiver. As a caregiver, ask yourself the following questions. Have you:

  • Felt lonely
  • Had back pain
  • Had crying spells
  • Been irritable or edgy
  • Felt useful and needed
  • Felt completely overwhelmed
  • Had difficulty making decisions
  • Felt a loss of privacy or personal time
  • Felt you couldn't leave your loved one alone
  • Had trouble keeping your mind on what you were doing
  • Been satisfied with the support your family has given you
  • Felt sick; such as stomach problems, headaches, or a cold
  • Felt strained between your work and caregiving responsibilities
  • Had your sleep disturbed because you were caring for your loved one
  • Been upset that your loved one has changed so much from their former self
  • Found your loved one's living situation to be inconvenient or a barrier to their care

On a scale of 1 to 10, with 1 being, 'not stressful,' and 10 being, 'very stressful,' rate your current level of stress. On the same scale of 1 to 10, with 1 being, 'very healthy,' and 10 being, 'very sick,' rate your current level of health to what it was at this time last year.

Responding with a, 'yes,' to the questions above could mean that a caregiver needs to be assessed for counseling or intervention. A caregiver might benefit from a medical checkup, or a referral to a doctor or a support group. A caregiver might be encouraged to arrange for some relief from caregiving, and may want to talk with their doctor about community resources that are available to them.

Challenges Caregivers Face

Issues with sleep and exhaustion are two of the most common reasons people with dementia are placed into nursing homes. The causes of sleeplessness in people with dementia include pain, anxiety, a lack of activities and exercise, agitation, and too much caffeine or fluid late in the day. Another leading reason people with dementia are institutionalized is urinary incontinence. Urinary incontinence in people with dementia should be evaluated for treatable causes to include electrolyte and calcium abnormalities, a urinary tract infection, estrogen deficiency, and prostatic hypertrophy. A regular toileting schedule of two or three hour intervals, as well as verbal prompting, might help.

Aggressive behavior and agitation have been reported in 65% of people with dementia who live in a community. The reasons for aggression and agitation include things such as physical discomfort, over-stimulation, complicated tasks, unfamiliar people or surroundings, and frustrating interactions, as well as delusions, paranoia, or hallucinations. A caregiver might be ambivalent or embarrassed to talk about any inappropriate sexual behaviors their loved one with dementia exhibits. People with dementia are also many times reluctant to stop driving, even when safety is a very real issue. Repetitious questions from a loved one might be due to short-term memory loss and an overstimulating or under-stimulating environment that has lead to feeling out of control, anxiety, or fear.

The responsibilities for caregiving fall disproportionately on women; approximately 72% of caregivers are women. Most of these women are elderly, are spouses, and have multiple roles in life such as daughters or daughters-in-law. Doctors need to be aware that caregivers as a population are emotionally, physically, and financially vulnerable and are many times, 'hidden patients.'

Caregiver Needs Related to Loved Ones with Dementia

Dementia has a deteriorating course of an extended period of time, and issues with providing care can be anticipated and planned for in advance. A doctor can help a caregiver and the person's family to anticipate the changes, role transitions, and arrange for support and education. In the earliest stages of the disease it is important for caregivers to identify a health care proxy for the loved one with dementia and to complete a Durable Power of Attorney for Health Care form, keeping copies available.

Caregivers need to maintain their own personal health and vitality if they are to continue providing care for the person with dementia. They should also become familiar with adult day care services, or in-facility or in-home respite services. Caregivers should visit and evaluate a number of long-term care facilities in advance of the need for placement of their loved one. Caregivers may also need help with understanding that placement of their loved on in a facility might be a part of the progression of their loved one's dementia.

Providing care for a person with dementia can also present a caregiver with financial strain. A doctor can help a caregiver to explore the issues and make a referral to legal services. Legal services can help a caregiver with making decisions for the future, as well as financial planning.

Related:

  1. Information and Concerns About Home Care - Providing Care at Home - Costs of providing care in a persons own home and community are much lower than providing the same quality of care in an institution.
  2. Most People Will Need Long-Term Care at Some Stage - Long-term care encompasses the support services people might need when they struggle with disability or chronic disease.
  3. How to Choose a Home Health Aide - Information on how to choose a home health aide before making a hiring decision.









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