THE BLOG
05/02/2014 03:58 pm ET | Updated Jul 02, 2014

4 No-Nonsense Solutions to the Looming Dementia Crisis

The dementia tsunami is coming, fast. We all know it, and it will affect every single one of us, either directly or through our loved ones. That we are not prepared for such an onslaught is an understatement. Dementia is an expensive disease, and if we do the maths, we can see that our current health care system and long-term care infrastructure cannot hold up to what is to come.

2014-04-01-worlddementiatrends.jpg

(Chart from The Global Impact of Dementia 2013-2050)

The dementia problem requires high level solutions from multiple sectors: public health, health care, community, business, and technology. It will take a whole world to effectively tackle the problem. Those solutions need to be thought out from the ground up, starting with the persons with the disease and those caring for them. As someone working in the trenches of dementia, here are some no-nonsense strategies to help mitigate the problem:

1. Better prevention

The current consensus leans towards the need to emphasize a whole suite of lifestyle and diet factors. According to a National Institute on Aging report and the Alzheimer's Association, here are six things you can do to promote brain health:

  • Do 30 minutes of aerobic exercise every day. Exercise is good for the brain and also helps decrease cardiovascular risk factors, a known risk for dementia.
  • Maintain a healthy diet rich in fruit and vegetables. Like exercise, eating healthy can help with cardiovascular factors. It also helps with obesity and diabetes, two other major risk factors for dementia.
  • Remain socially active. Keep on working, volunteer, join social clubs, travels, get out.
  • Engage in intellectually stimulating activities. Exercise your brain by doing crossword puzzles, taking courses, playing social games, reading, writing, gardening...

Most remarkable is the fact that exercise, diet, socialization, and mental stimulation combined have been shown to be more likely to lower the risk of dementia than any one of those factors alone! This information needs to be broadcasted more broadly to overcome the amount of misinformation in the general public.

2. Better diagnosing

For a disease category that is bigger than either heart disease or cancer alone, dementia is being treated like the poor cousin of illnesses by the medical field. This is due in part to the prevalent attitude that no cure means no hope. The truth is this not the case, and getting a proper diagnosis early on can make a big difference in the quality of life for both patients and their families. It also has the potential of saving big money to large institutions such as Medicare and other health insurance companies. Right now, the most likely scenario is for the patient to receive a generic dementia diagnosis from a primary care physician after a quick evaluation. This is ignoring the fact that dementia is not a disease, but rather a cluster of different dementia subtypes, each with a different etiology, prognosis, treatment, and behavioral manifestations. Here are several reasons why an accurate diagnosis is important:

  • A mild cognitive impairment diagnosis can motivate patients to make lifestyle changes, with the hope that those might delay a progression to full-blown dementia.

  • New vascular events can be prevented in vascular dementia. This can help prevent further worsening of the dementia.
  • Not all dementia medications work for all dementias. Some can actually cause adverse health effects or lead to behaviors if used for the wrong kind of dementia.
  • Not knowing the exact type of dementia makes it difficult for caregivers to understand the dementia behaviors and the best ways to address them.
  • Caregivers find it most helpful to attend support groups with others dealing with the same type of dementia. Not knowing the type of dementia for their loved one, denies caregivers the chance to find their group.
  • Prognoses for different dementias vary widely, from less than one year for Creutzfeldt-Jacob Disease to possibly 20 years in the case of Alzheimer's. Caregivers need to know so that they can effectively plan for the long-term.
  • About 9 percent of dementias are due to reversible causes. If addressed early, such dementias can be reversed.
  • A correct diagnosis increases the chances of benefiting from clinical trials.
  • A better understanding of dementia and of the best places to get an accurate diagnosis need to be provided to both the general public and to health care professionals. Neurologists and memory care clinics should be the go-to places for an accurate dementia diagnosis.

    3. Better caregiver support

    Statistics from the Alzheimer's Association speak to the extraordinary stress suffered by dementia caregivers, with 40 percent suffering from depression and 72 percent expressing relief when their loved one dies. This is due to the unique challenges from the illness in terms of its intensity, duration, unpredictability, and all encompassing features. Caring for a loved one with dementia is akin to running a marathon one did not sign up for, and more importantly one did not prepare for. Such care burden demands that caregivers be supported in ways that can sustain them throughout the duration of the disease:

    • The Mindfulness-based dementia care (MBDC) training can help with lowering caregiver stress while at the same time promoting an enduring sense of self-efficacy in their caregiving interactions.

  • 24/7 access to peer support would help caregivers feel less alone. There needs to be a way for caregivers to connect with others in between support groups. While the technology solution is simple, efforts at creating such social networks have not succeeded so far.
  • Care management systems to help lighten the load off primary caregivers, whether in person, or online, need to be encouraged and suggested by medical teams at the time of diagnosis.
  • Adult day programs are a grossly underutilized and underfunded resource that can help delay institutionalization for the person with dementia, and also provide much needed respite at a reasonable cost for the caregiver. Such programs could be revamped to appeal to persons with dementia in earlier stages of the disease.
  • There needs to be more volunteer management initiatives to help lower the cost of at-home care. Lotsa Helping Hands is a good example of a technology-enabled effort that has helped many tap into their close family and friends network for help.
  • Long-term care insurance also needs to be promoted more widely. Such insurance can help lighten the financial stress from long-term care, including covering the costs for home-care.
  • 4. Better residential options

    When comes the time for the person to move into an assisted living community or a nursing home, affordable and quality options are few, if not impossible to find. This is due in part to the high labor costs associated with high quality dementia care, along with stifling regulations, and a lack of innovation from the assisted living industry. The big question we all need to ask ourselves is, would I want to move into any of the current living alternatives offered to persons with dementia? If the answer is no, we know something has to change. The way of the future for residential dementia care might look like this:

    • We can create dementia villages such as the one in the Netherlands where residents can continue to function in ways that maximize their sense of well-being. Dementia does not change our basic needs to come and go as we please, to continue with our pre-dementia routines of work and home life, and to be part of a larger community.

  • We need to move away from the traditional "activities" model used in dementia care and assisted living, to one of engagement. Persons, no matter how far along in their dementia, do not want to be entertained. Instead, they want to feel that they are a part of the life of the community. They want to feel relevant and useful.
  • We need to tap into the wider community and start a dementia volunteer movement, similar to the hospice volunteer model. One of the greatest gifts we can give a person with dementia is personalized engagement based on the person's abilities and preferences. This can be best accomplished in one-on-one interactions.
  • Technology can play many useful roles in residential dementia care. Lately, many startups have jumped into the space and are trying to provide solutions, particularly in the areas of sensing, care management, calendaring, and videoconferencing with family members. It is yet to be determined which tech solutions will emerge.
  • For those without families and/or without the means to afford the typical $5-10,000 monthly fees associated with specialized care in the U.S., we need to think beyond our domestic borders and offer alternatives in countries where labor and real estate costs are low. While not for everyone, this option would be a much more humane solution than the all too common alternative of overcrowded, understaffed, and depressing facilities.
  • None of these solutions are impossible. Some can be implemented relatively easily and quickly. Others will require more coordinated efforts, and greater investments. All demand that we move from a place of denial and fear, to one of hope, creativity, compassion and action. It is not all downhill from the time of diagnosis, but rather an opportunity to create new ways of being with each other, within our families, and the larger community. We want to do this for ourselves, and also our loved ones.

    Disclosure: The author of this post is the founder of the Presence Care Project, a non-profit organization with the mission to share and research the Mindfulness-Based Dementia Care program.

    Subscribe to the Lifestyle email.
    Life hacks and juicy stories to get you through the week.