Dementia Care: Who Should Be on Your Team?0 USER TIPS ADD YOUR TIP
Learning that you or someone you love has dementia can be difficult. But you don’t have to go it alone. As is the case with cancer and other complex illnesses, there are many types of providers who can help with the health needs of someone with dementia.
You’ll want to build a health care team based on the type of dementia you or your loved one has. (Alzheimer’s disease makes up anywhere from 60 to 80 percent of dementia cases; vascular dementia—which occurs after a stroke—is the second most common type.) Keep in mind that many forms of dementia are progressive and you may need different types of providers and care facilities over time, says Beth Kallmyer, MSW, Vice President of Care and Support for the Alzheimer’s Association.
Here’s a guide to help you put together your dementia care team:
Primary care physician (PCP): A PCP or family physician can diagnose dementia by taking a careful medical history, performing a physical examination, and running certain tests. But sometimes it’s difficult for a PCP to identify the specific type. In that case, a person may need to see a neurologist. Seeing a primary care physician who has experience working with dementia and Alzheimer’s patients is best, advises Kallmyer.
Neurologist: Neurologists specialize in issues related to the brain and nervous system. You’ll want to find one who focuses on memory issues and dementia. Neurologists can also prescribe more specialized tests and treatments to identify the type of dementia a person is suffering from. Causes of dementia include:
- Alzheimer’s disease
- Vascular dementia
- Lewy body dementia
- Mixed dementia
- Parkinson’s disease
- Frontotemporal dementia
- Creutzfeldt-Jakob disease
- Normal pressure hydrocephalus
- Huntington’s disease
- Wernicke-Korsakoff Syndrome
Gero-psychologist: A professional psychologist who specializes in helping older people and their families. They can assess a person’s cognitive abilities, help diagnose dementia, and consult with families and health professionals among other things.
Geriatrician: An alternative to a PCP, a geriatrician is a primary care doctor who specializes in treating older adults. Unfortunately, there aren’t enough of them to meet the projected demand. To find one, you can start by contacting an academic medical center.
Cardiologist: For people with vascular dementia, controlling conditions that affect the underlying health of a person’s heart and blood vessels can sometimes slow the rate at which dementia progresses and may help prevent further decline. Ask the primary care doctor treating your loved one if they need to see a cardiologist (a doctor who specializes in diagnosing and treating diseases or conditions of the heart and blood vessels). One may be needed if the person with dementia has hard-to-control blood pressure or cholesterol, blood-clotting issues, a history of stroke, diabetes, and certain other conditions.
Vascular expert: Vascular disease affects the circulatory system outside of the heart. Talk with your primary care physician to find out if your loved one’s current health or form of dementia makes them a candidate for regular appointments with a vascular specialist. Vascular specialists can diagnose and manage disorders that affect the arteries, veins, and lymphatic systems.
Geriatric psychiatrist: When someone with dementia is having behavioral issues such as unmanageable anger, a geriatric psychiatrist can help evaluate them and provide medication support, if needed, as well as other strategies. (You can look for one with the Alzheimer’s Association’s Community Resource Finder.) Note that not everyone with dementia will need to see a psychiatrist.
Other health care professionals
Geriatric care manager: A geriatric care manager is typically a licensed nurse or social worker specializing in geriatrics. They’re often described as being like a “professional relative.” They can assist with issues like home safety assessments, short- and long-term care planning, and supporting both patients and caregivers. They generally charge by the hour, and most insurance plans don’t cover the cost; Medicare doesn’t cover it either. The Alzheimer’s Association’s Kallmyer advises again that you look for someone with experience working with dementia and Alzheimer’s patients.
Physical and occupational therapists: These tend to be most helpful in the middle stages of dementia, when a person’s functioning may be impaired but not gone. For example, an occupational therapist can help figure out workarounds (like labeling clothing drawers) so that someone with dementia can still self-feed or get dressed. A physical therapist may help someone maintain an exercise program to improve balance and prevent falls.
Nutritionist: People with dementia may forget to eat. As their disease progresses, they can also have difficulty swallowing and using utensils. A nutritionist can help find creative ways to make eating easier, such as making smoothies and shakes, and how to get the right balance of nutrients. Ask your PCP or geriatrician to recommend some names, and look for someone who is a registered dietician (RD) or registered dietician nutritionist (RDN) and has experience working with people with dementia.
Skilled nurse or companion in the home: Even if the person with dementia lives with you, you can’t be with them 24 hours a day. An in-home care provider who has experience working with people with dementia can help with bathing and other hygiene, feeding, and other health and safety needs.
Other types of support
Support groups: It can help to talk about a dementia diagnosis with others who share your experience. Contact an Alzheimer’s Association local chapters to find a support group near you; these groups include people with other forms of dementia, not just Alzheimer’s. Many also sponsor group activities, such as outings to art museums and other cultural events. Support groups can a great way to learn more local services, such as respite care and day care programs.
Research participation: Participating in a research study can help you become part of the effort to find new treatments for dementia and its causes. As an additional benefit, study participants often get regular check-ups and other health services free of charge. Visit the National Institute on Aging’s website for information on dementia research and clinical trials.
Adult daycare programs: These are local programs that give caregivers a much-needed break while allowing older adults the chance to socialize and take part in activities in a safe environment. Some of them specialize in Alzheimer’s and dementia care. They may also provide medical services such as eye exams, insulin shots, and more.
Independent living facilities: Also called retirement homes, these facilities will let people live there in the early stages of dementia (also called the mild cognitive decline stage) if they’re still able to care for themselves. If you have a spouse or partner or caregiver who you’ll be living with, you have a better chance of being accepted to one of these places.
Assisted living facilities: A facility that provides more services than independent living, including meals and housekeeping and some health care. Assisted living facilities sometimes accept early stage dementia patients, too, depending on the home.
Nursing homes and skilled nursing facilities: If a person with dementia who has been living at home has a heart attack, fall, or other acute condition, a skilled nursing facility can care for them. They also offer long-term care. Many of these nursing facilities also have special units for more advanced dementia patients, usually called memory care or dementia care units.
Group homes: There are also professional caregivers who care for a small number of people with dementia in a home-style setting and take a small number of patients. These can be a very nice alternative to large facilities, but tend to be expensive. Some may or may not offer care for advanced dementia patients.
Palliative care: Palliative care focuses on improving quality of life for people with serious, chronic, and life-threatening diseases. Research has found that those with dementia are less likely to be referred to palliative care teams and are prescribed fewer palliative care medications. Talk to your care team, including your doctor and geriatric care manager, to make sure you’ll have access to palliative care services when you need them.
Hospice care: Hospice is a type of care focused on comfort and dignity for people at the end of life. A hospice team may include doctors, nurses, social workers, counselors, clergy, home health aides, family members, and volunteers. They can help with pain management, medical care and equipment, grief support, respite care for caregivers, even making family meals and cleaning.