Care Decisions When a Parent Has Dementia

Imagine that you are the son or daughter of an 85 year-old man who has been living in a local memory care facility

For the two years since he was diagnosed with dementia. You receive a phone call from the facility’s administrator requesting a meeting in which you are then informed that your father’s dementia has progressed to the point that he now requires 24-hour one-on-one assistance. You are also told that this type of service is not provided by the facility so you will have to hire around the clock assistance from a third party caregiver if he is to remain in the facility. What will you do?

 After studying the cost of the additional care combined with the cost of the facility, you realize that the total cost would be beyond your father’s means. You are now faced with essentially two alternatives: find another facility that can provide the level of care your father needs at a cost you can afford or find a way to care for him in your home or that of another relative.

The final decision likely rests with you and a few other family members, and trying to solve this problem and arrive at the best decision can be daunting. The best approach? Seek guidance and advice from trustworthy sources and do your research. Some ideas to consider:

• A geriatric care manager, who is normally a licensed nurse or social worker, can assist you with evaluating living arrangements, short and long-term planning, coordinating medical and care services and selecting care organizations. This service, which is normally fee-based, can be particularly helpful when family members are separated by distance. To locate a Peoria area certified geriatric care manager use aginglifecare.org.
• Your father’s primary health care provider may be a source of advice and guidance beyond medical care. Increasingly, medical practices that serve older adults have experts in care management on their staff whose function is to help their patients stay healthy. This individual may be called a care manager, a health coach, or a case manager.
• Internet-based senior living care locator services can help you quickly build a list of candidate facilities to consider and may offer advice and guidance as your search progresses. These services are typically free, with the locator service collecting a commission from the facility upon placement.
• The Alzheimer’s Association is a go-to resource for the families of individuals with Alzheimer’s disease and other dementias and is well worth investigating. Their website (alz.org) contains a wealth of knowledge, and includes a section offering help and support information for family caregivers. Their free 24/7 Helpline (800-272-3900) offers confidential support and information by specialists and master’s-level clinicians to people with the disease, caregivers, families and the public.
• If the decision is made that your father will live in your home, the Central Illinois Area Agency on Aging can be a gateway to services and supports for him—and you—and should be included in your planning. There is no charge or income requirement for an initial assessment. Contact them at (309) 674-2071; for more information go to ciaoa.net.

Reaching the Decision

Having completed your research, try to evaluate at least three memory care facilities for suitability and overall affordability given your father’s care needs and financial constraints. Enlist a friend or relative to accompany you; a friend who has gone through a similar search in the past can be very valuable.

When the decision has been for care at home, continue to build your network of support resources for the long term, widening it as your and your father’s needs dictate. For example, in-home caregiving services and adult day care are two that provide a family caregiver important time “away” for work, social activities or just to refresh that is crucial to their well-being.

Adult day care may be a cost effective support option for older adults when the family caregiver has to be away from the home during the workday or parts of the day. In Peoria, OSF Senior World is an example of this type of care. Senior World staff are trained in the areas of gerontology, social work, nursing, recreational activities, certified nursing assistants and food certified managers. Call (309) 495-4530 for more information.

A licensed home care agency may also be an effective part of your overall care plan. Look for an agency that has experience working with individuals who have dementia. Bringing in home care services enables the caregiver to have the freedom to schedule work and social activities away from the home while knowing that their parent is well looked after in surroundings that are familiar to them.