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Every post on AlzConnected<\/a>, a message board for individuals caring for loved ones<\/a> with Alzheimer\u2019s and dementia<\/a>, is heartfelt and authentic. (Is it normal for an Alzheimer\u2019s patient to wave to himself in the mirror? What\u2019s the best way to handle fantastical delusions? Is there a checklist for keeping the household environments safe for a dementia patient? I need to vent a little; I am mentally and physically exhausted and it seems like I have rarely had a moment to myself in years.<\/em>)\u00a0<\/p>\n The board, created by the Alzheimer\u2019s Association and part of a platform to provide support around the disease and the people it affects, has thousands of posts. Some come from spouses and family members of the newly diagnosed, others are questions about various stages of memory loss, and still others are requests for guidance on navigating memory care or how to care for themselves while caring for someone else. These are people experiencing the enormous changes Alzheimer\u2019s and dementia undoubtedly have on patients and their families. And, for those who\u2019ve never experienced a diagnosis like dementia or Alzheimer\u2019s, there\u2019s no real way to know what they don\u2019t know and what lies ahead until they\u2019re living it every day.\u00a0<\/p>\n Currently, more than 6 million<\/a> Americans are living with Alzheimer\u2019s disease<\/a>. By 2050, that number is anticipated to reach 13 million. The amount of invisible and often unpaid work involved in managing and caring for that population is tremendous. In fact, the Alzheimer\u2019s Association reports that in 2022 alone, an estimated total of 18 billion hours (valued at about $339.5 billion) were spent by unpaid individuals caring for loved ones. Spouses, children, friends and family members tasked with caring for a loved one often struggle to build their own network of support.\u00a0<\/p>\n Caregivers are often managing their own lives<\/a> on top of their loved one\u2019s dementia or Alzheimer\u2019s care. This rings especially true for adult children, who might still have children of their own to raise and care for on top of a career. The National Alliance for Caregiving (NAC) and AARP reported in 2020 that roughly 61% of caregivers have jobs and 45% stated they\u2019ve experienced the financial impacts of being a caregiver. Twenty-four percent of the survey respondents said they\u2019re caring for more than one person, while 24% say their own health has declined since taking on the care of their loved one<\/a>.<\/p>\n Tapping into networks like the one at AlzConnected can remind caregivers that they aren\u2019t alone, help them stay connected to their own needs, or offer valuable perspectives as they manage the later stages of their loved one\u2019s disease. \u201cWe have more than 1,000 new members who join AlzConnected every single month,\u201d says Monica Moreno, Senior Director of Care and Support at the Alzheimer\u2019s Association. \u201cIt\u2019s a place to share and support one another.\u201d<\/p>\n As we age, changes normally happen in the brain, says Moreno. At the same time, some changes don\u2019t fall within that normal range and may indicate a more serious diagnosis. Part of Moreno\u2019s job is bolstering awareness of Alzheimer\u2019s and dementia so diagnosis happens early. \u201cIt\u2019s not discussed enough,\u201d says Moreno.\u00a0 \u201cThere is a lot of misunderstanding around dementia and Alzheimer\u2019s.\u201d\u00a0<\/p>\n Moreno is clear that education and early diagnosis are key factors in helping prepare for the next wave of Alzheimer\u2019s and dementia patients. From open communication within families to accessing doctors with the appropriate tools for diagnosis, many factors ultimately feed into building a support system around the disease. \u201cThere are 10 warning signs for Alzheimer\u2019s disease,\u201d says Moreno. \u201cIf you even recognize one, we encourage people to go to the doctor. \u201cAt the end of the day, families and individuals need to be champions for getting an early and accurate diagnosis.\u201d<\/p>\n Several organizations offer a wealth of information and research, such as: <\/p>\n Podcasts such as Bob\u2019s Last Marathon<\/a> and Life on Repeat<\/a> offer up candid perspectives on the ins and outs of dementia caregiving.\u00a0<\/p>\n The more you can advocate for yourself as a caregiver, the more supported you\u2019ll feel and the better off your loved one will be, too. Sarah Dulaney, Clinical Director at Care Ecosystem at the Memory and Aging Center at University of California, San Francisco, says this is especially important for the sandwich generation, who are often working, raising children and caring for aging parents<\/a>.\u00a0<\/p>\n It\u2019s also important to know the ins and outs of the Family Medical Leave Act<\/a>. In fact, according to a 2022 paper<\/a> released by the Rosalynn Carter Institute for Caregivers, one 2019 study showed that nearly 22% of the US work force identified as a caregiver, with 60% working at least 40 hours on top of caregiving. \u201cThey have limited time,\u201d says Dulaney. \u201cHow can employers support them to remain in the workforce so people don\u2019t have to make those kinds of decisions?\u201d It\u2019s important to talk to your employer about your situation and keep an open line of communication so that when conflicts or emergencies arise, your boss has the opportunity to support you, too.\u00a0\u00a0<\/p>\n Share your experience with close friends and those you trust in your community. It can be so helpful, whether that results in help with occasional childcare or a midweek meal delivered to the house. These small gestures can go a long way to keep caregivers afloat during particularly busy weeks.\u00a0<\/p>\n Assuming the responsibility of someone else\u2019s care is stressful. Overall, reports the Family Caregiver Alliance<\/a>, individuals caring for others have higher risk of heart disease, an increased likelihood of developing serious illness, and diminished immune response in comparison to those who are not caregivers. It may not always be intuitive to put yourself first as a caregiver, but self-care is an important part of caring for others. Here are a few things to keep in mind as you build a structure for self-care and overall wellness.\u00a0<\/p>\n As the healthcare industry explores ways to improve care for Alzheimer\u2019s and dementia patients, it is also considering the experience of caregivers, too. In August, the Alzheimer\u2019s Association launched the Dementia Care Navigation Roundtable<\/a> (DCNR), to build consensus among experts around dementia care as well as support for caregivers navigating the dementia care system.\u00a0\u00a0<\/p>\n Through DCNR, the Alzheimer\u2019s Association has assembled a panel of experts who are building out new ways to not only diagnose dementia early but also guide families through making decisions and accessing appropriate care. In addition, the pilot will address various barriers (financial, linguistic, cultural, logistical, and educational) to ensure patients and their caregivers have access to the support they need. \u201cIt can be very isolating and there\u2019s a stigma to it,\u201d says Moreno. \u201cFor caregivers who are already overwhelmed it can take a huge burden off their shoulders.\u201d<\/p>\n\nThe invisible work of caregiving<\/h2>\n
Educate yourself<\/h2>\n
Lean on helpful tools<\/h2>\n
Educate your circle\u00a0<\/h2>\n
Put yourself first<\/h2>\n
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Look for expert advice<\/h2>\n