At-Home Care for Loved Ones with Dementia

By American Geriatrics Society (AGS)

Many families feel that they don’t have any other choice but to care for their loved ones at home without outside assistance. According to the Alzheimer’s Association, 28 percent of caregivers have annual incomes less than $20,000. Financial constraints force them to personally shoulder the burden of providing care for their loved ones.

Even families with higher incomes may find themselves caught in that proverbial sandwich between the financial needs of their elderly parents and the financial needs of their college-age children. When money’s tight, providing in-home care rather than spending thousands of dollars for care outside the home may be the best choice. In fact, two-thirds of families caring for a dementia or AD patient choose in-home care as their initial care option.

The benefits

Providing in-home care in your loved one’s home or in your own home does have some concrete benefits:

  • You may worry less because you believe you can better keep an eye on your loved one.
  • You have the opportunity to spend more quality time together.
  • Your loved one may feel more independent.
  • You know that your loved one is being well cared for and treated with love and compassion.
  • Other family members may be able to help provide care as needed.
  • You may feel a unique, deep sense of pride and accomplishment in your role as caregiver.
  • If your loved one is your parent, you’re giving back by providing reciprocal care for the parent who cared for you as a child.
  • You may discover things about yourself that you may have overlooked had you not become a caregiver. For example, you may find that you’re more caring, supportive, nurturing than you knew, or perhaps you find out that you’re an effective problem-solver who possesses great organizational skills.
  • You get in touch with your ability to advocate for yourself and your loved one.
  • You may discover that you’re resilient.

The drawbacks

Now for the cons:

  • You may have to invest some money in refitting the house to accommodate your loved one’s needs if the disease is severely advanced or if they have a co-existing medical illness. For example, your loved one may need a grab bar in the bathtub and a toilet seat booster.
  • The strain of providing round-the-clock care by yourself and or overseeing paid caregivers can create tremendous physical and psychological stress and lead to health problems for you as the caregiver.
  • Serving as a primary caregiver can negatively impact your marriage and your family relations due to less time available for you spouse and children.
  • Serving as a primary caregiver can adversely affect your career if it takes you away from your work.
  • Creating space for your loved one in your home can lead to crowding for other family members. For example, siblings who previously had their own rooms may have to share a room to allow Grandpa to have his own room, which can lead to other problems.
  • You may have to prepare a special menu to address your loved one’s nutritional needs.
  • You may have very little free time for yourself and your family.
  • The additional costs associated with caring for your loved one may impose a financial strain on your family.
  • No matter how diligent you are, your loved one may still wander away or have an accident, which can lead to feelings of guilt for you as the caregiver.

Although it may sound like a lot of negatives are associated with providing in-home care, you can do many things to make it a more positive experience for the whole family.

Cost issues

Common directs costs to care for your loved one at home may include ongoing medical and doctor care, prescription and over-the-counter drugs, incontinence supplies, and any paid help. However, indirect costs include your own time as an unpaid caregiver including time lost from outside work.

Here are a few of the specific costs that you’ll also have to consider:

  • Mobility and medical equipment: If your loved one’s mobility is limited, a wheelchair can be a lifeline for use both inside and outside, thus ensuring that he can still get some fresh air and that friends and relatives can still take him out and about. Check with local medical supply companies because costs can vary throughout the United States.
  • Different types of wheelchairs are available: Some fold up so they fit in the car trunk; others are electric and can be operated by the person. Note: It takes cognitive ability to safely operate an electric wheelchair (just as it does to drive a car), so a wheelchair will no longer be appropriate as dementia progresses. Doorframes can be adjusted to accommodate a wheelchairs and a ramp can be installed to allow easy access to entrance doors, bypassing stairs.
  • Home adaptations: A large number of special aids and home adaptations are available to make life easier for people with increasing cognitive and physical difficulties. Of course, these adaptations come at a cost. A physical or occupational therapist from a local home health agency can assess a person’s needs and suggest suitable aids, including
    • A walk-in shower with a seat
    • A shower chair
    • Raised toilet seats (with or without arms)
    • Handrails throughout the house
    • A chair stair lift installed on stairs to facilitate going up and down
    • Bedside commodes
    • Large-faced clocks for better visibility

Some funding may be available for these alterations and adaptations through local agencies or organizations. However, more likely you’ll need to purchase them privately. Call your local Area Office on Aging or Alzheimer’s Association.