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Joanne Lynn, M.D., M.A., M.S., heads the Center for Elder Care and Advanced Illness at Altarum, a Washington, D.C.–based health policy consultancy, where she focuses on designing and promoting better systems of care for older Americans, particularly for those aging with serious chronic conditions. Through policy recommendations, professional development programs, and demonstration projects, Lynn has advocated for a wide range of delivery system reforms to make elder care more cost-effective. These include promoting the use of elder-directed comprehensive plans of care and increasing the availability of social and supportive services — financing them in part through savings from more appropriate medical care. Transforming Care spoke to Lynn about how to improve care for patients with dementia.

Transforming Care: When it comes to the care of patients with dementia, what’s most problematic?

Lynn: The most fundamental issue is the lack of continuity of care. Our system is built around a fix-it model: you show up with a problem, we fix it, and you go back to your life with no particular contact with us anymore. Dementia patients require ongoing, personalized support to manage the progressive decline. A related problem is the lack of training in how to be supportive and helpful to a person living with dementia and their family. The disease can have a devastating impact on a family’s life and finances and as a health system we’ve done exceedingly little to remove that. We actually don’t have any public conversation about cognitive failure. I often challenge audiences to tell me what they hope their life or loved one’s life would be like after a diagnosis and they can’t point to any examples. Famous people with the disease rarely announce it. Often they just vanish. So we don’t have useful exemplars, nor ways for caregivers to talk about the experience of feeling isolated or overburdened or terrified of what the future holds when they are trying to take care of their dad.

Transforming Care: What would a more ideal approach look like?

Lynn: It is something like the Program of All-Inclusive Care for the Elderly (PACE), which combines medical and social services for patients who are eligible for nursing home care but prefer to live at home. Patients in the program have access to day care services, home-based supports including things like delivered meals, and medical management. The interdisciplinary teams that serve patients do a comprehensive assessment and can provide anticipatory guidance to the patient and family. One of the magic sauces in PACE is the promise to stay with you to the end of life. You could build a good care system on your own if you can find a good day center, a good aide, a good social worker with experience with dementia, and a doctor who gives you appropriate medication. But PACE comes as a bundle and follows you to the end of your life. That reduces the emotional burden on the family significantly.

Transforming Care: Would the PACE model need to be adapted to meet the needs of dementia patients?

Lynn: The eligibility criteria would need to be adjusted. One of the problems with PACE is you can’t get in until you have impairments with two or more activities of daily living. That’s fairly far along for someone with dementia who may need round-the-clock supervision but with prompts is still able to get dressed and feed his or herself. There are probably ways to make it more efficient as well. Another problem is that persons who are not yet eligible for Medicaid face enormous barriers to enrolling and accessing prescription drug coverage.

Families living in communities that offer door-to-door transportation are much luckier than ones that live where there are only vouchers to ride their buses. It’s a thousand little things like that that make it possible for families to cope.

Transforming Care: Couldn’t Area Agencies on Aging (AAAs) help organize care for families in this way?

Lynn: They could be an important partner, but the locus of funds and power is in the health care system. Provider organizations participating in risk-based contracts and managed care plans also have a means to recover money that is now spent on avoidable hospitalizations and low-value care. If we reduced both, this money could be used to pay for comprehensive clinical care as well as the long-term services and supports dementia patients and their families need. Under the pending CHRONIC bill in Congress, managed care plans would be allowed to pay for nonmedical services, so [if the bill passes] they may well be looking to pay AAAs and local service organizations to coordinate and provide these services.

Transforming Care: How could primary care be enhanced to meet these patients' needs?

Lynn: Once people are quite disabled they really need services at home, because getting to the doctor is a challenge. In addition, the average primary care doctor has never been taught to give guidance to families about the unique problems that can arise with patients with dementia: how to deal with inappropriate sexual advances, for instance, or the person who is using racial slurs with personal aides because they’ve reverted to language they used when they were 12 years old. Families want to understand how to get mom bathed when she screams when they take her to the shower or how much to push feeding her when she has stopped eating. Doctors, mostly, don’t know.

Transforming Care: You pointed out as a country, we’re uncomfortable talking about dementia. How would you go about changing public discourse?

Lynn: It would help to have a national caregiver movement. Caregiver organizations are actually fairly frail. There ought to be millions of people who are members, not tens of thousands.

Transforming Care: What about using the Death Café model, which offers people an opportunity to discuss their thoughts and fears about death, to encourage conversations about aging and disability?

Lynn: The Death Café is one of dozens of useful models, but it’s hard to get 50-year-olds talking seriously about disability or death. There is a lot of denial generally, including about how much money is needed for retirement and the adequacy of long-term care insurance to cover the needs of the population. People think keeping a person home is less expensive, but it is not. If you need paid help, it can cost over $200,000 a year. Only a small proportion of the population has savings enough to cover retirement and living with the illnesses and disabilities that mark the last phase of life. We will need to develop a public discourse around this.

Transforming Care: What are you optimistic about?

Lynn: If the Centers for Medicare and Medicaid Services is not too aggressive in the savings it demands from accountable care organizations, I think they have the potential to accelerate the integration of medical care and long-term services and supports, which is what we advocate for in our book Medicaring Communities. So much of how you live with advanced dementia and how your family can cope depends on what your community is able to offer. Families living in communities that offer door-to-door transportation are much luckier than ones that live where there are only vouchers to ride their buses. It’s a thousand little things like that that make it possible for families to cope. [pull quote] Thinking about caring for dementia patients and millions of other frail elders as part of a community endeavor that brings together public health, social services, and the health care system will help.