Alzheimer's blog

Caregivers need more, but support services available

By Angela Lunde June 26, 2013

Last week on the longest day of the year and the official start of summer, June 21, people across America joined the Alzheimer's Association and organized group activities from dawn until dusk to raise money and awareness of the disease and to honor caregivers.

Many caregivers feel as if every day is the longest day. The popular book "The 36-Hour Day" reflects that notion. In another great book, by Gail Sheehy, called "Passages in Caregiving," she says that the vast majority of family caregivers are swept in with no preparation or training for the role they're expected to perform or the transitions they'll face. They're unprepared for the emotional toll that accompanies the journey. If an ad for the job existed it might look something like this:

HELP WANTED: Untrained family member to act as advocate, researcher, care manager and emotional support for a parent, spouse, sibling or partner. Duties include: making medical decisions, negotiating with insurance companies, paying bills, completing legal work, providing personal care, managing medications, transporting, monitoring safety, directing activities, educating other family members, mediating conflict and learning new methods of communication. Hours: On demand. Salary: None. Benefits: Limited.

Being a caregiver for someone with Alzheimer' or a related dementia can be about as tough as it gets. I couldn't agree more with the comments of Joe and others who responded to the last posting. They and probably millions of others say what's needed most in this country is a serious focus on supporting family caregivers.

What can this nation do that would truly make a difference? What are your needs? I'd love to hear from you. In the 12 years that I have spent with caregivers, I have a sense for what I believe many family caregivers need and deserve. It goes like this:

Family caregivers need:

  • To be asked about their needs, goals and preferences.
  • To easily know where to find the help and resources that match their preferences, values and financial situation.
  • To know how to arrange breaks and have the financial assistance and community resources to do so.
  • To be offered information, support and practical strategies on how to cope with runaway emotions such as guilt, anger, resentment, worry, isolation.
  • A core group of individuals who support without judging.
  • A community that accommodates rather than isolates.
  • A nation that recognizes their contribution as the backbone of our broken health care system and, in doing so, creates policies and systems that support caregivers and reward their contribution.

It may seem like we're a long way from this, but we need a vision to drive the change. These are challenging times, but we're better off in many ways than we were a decade ago. The National Alzheimer's Project Act may ignite some needed change to help caregivers. Many states and communities are also taking action. In Minnesota for example, ACT on Alzheimer's is a statewide collaboration preparing for the impacts of Alzheimer's and related dementias. Sustaining and supporting caregivers is one of five key focus areas. Valuable services to support caregivers do exist in many communities. If you don't know about those listed below, you definitely should.

Companion services. Companion care is ideal for giving a caregiver a few hours away. It provides socialization and peace of mind for the caregiver. Meaningful relationships are often formed between the person living with dementia and the companion when a consistent companion is present.

Personal care assistants. In addition to providing companion care, personal care assistants offer help with activities of daily living from grocery shopping to personal cares such as dressing and bathing. They can also provide temporary overnight respite care.

Adult day services. Adult day offers care, supervision, socialization, limited health services, mind and body exercises and many activities in a safe, supervised environment. Participants leave home and attend daily or just a few hours a week.

Geriatric care managers. They assess needs and coordinate resources. They can take over nearly all aspects of eldercare in some cases. Some local government agencies and charities offer geriatric care consulting services free or on a sliding scale.

Care consultations. Offered by the Alzheimer's Association, a service that can help caregivers develop a road map to navigate through the many thoughts, emotions, and questions around memory loss and dementia. Call 800-272-3900.

Your local Area Agency on Aging. A clearinghouse for information about local services such as companion and adult day services, in-home care, transportation, meals, legal and financial assistance and home-based training for caregivers — all the kinds of services that can help keep a loved one at home longer and a caregiver well. Call 800-677-1116.

Circle of support. This can be a chosen one or two individuals, or joining a support group. Your local Alzheimer's Association or your local Area Agency on Aging will be able to tell you what's nearby. Being with others who will listen and who care may be the most powerful medicine on earth.

Jun. 26, 2013