Alzheimer's disease and dementia are some of the most important challenges facing the caregiving community today. There are currently over 55 million people living with dementia worldwide, and every year another 10 million will be added to the list.
Caregiving support for patients suffering from Alzheimer’s and dementia is in high demand, because it tends to affect an elderly demographic that is already in need of caregiver services and assistance. However, dementia is not limited to people over 65, and early-onset dementia can affect people as young as 30. Over 200,000 people under 65 are currently affected in the United States today, in addition to the 5.6 million Americans over retirement age.
Those numbers are also growing. From 2013-2017, diagnosis rates increased for people aged 30-44, 45-54, and 54-64 at 407%, 242%, and 90% respectively. That means millions of new caregivers will need to be added to the ranks of 43.5 million unpaid caregivers currently taking care of a loved one in the United States today, and Millennials will increasingly find themselves serving as a dementia caregiver.
Resources will be at a premium in years to come, and for those currently providing caregiving assistance for patients with dementia the need is immediate and critical.
Don’t worry. We’ve got you. We know how challenging it is to care for someone suffering from dementia, and we’re providing you with the links and dementia caregiver resources you need to make empowered decisions and create the best experience you can on your caregiving journey.
Where to Start With Dementia Caregiver Resources
Because Alzheimer’s is the most well-known example of dementia, it also has the best and most ubiquitous resource pool available. It’s a great first search engine term when you’re looking for general information. You can be sure that—whatever a particular dementia diagnosis may be—Alzheimer’s resources and experts will be able to point you in the right direction.
Also, because dementia is a progressive disease, dementia caregiving resources are divided into three categories: early-, middle-, and late-stage.
Patients in the early-stages of dementia are usually self-reliant, but experience mild symptoms of memory loss and cognition impairment. Caregiving at this stage involves long-term planning, emotional support, and assistance with everyday tasks.
The Alzheimer’s Association is an excellent resource to help prepare you for the types of challenges and situations you’re going to require. It covers safety advice, expectations, checklists, and guidance for making your experience with your loved one fulfilling and teamwork-oriented.
Also, one of the hallmarks of dementia caregiving is the need to engage in personal interactions that can be viewed as invasive. Car keys may have to be taken away, and independence may have to be restricted. Those receiving care sometimes feel babied or infantilized by their caregiver, and it can be a difficult dynamic to manage.
Early-stage dementia is also when you’ll want to start researching government assistance and local programs that will ease your caregiving burden as things progress. The AARP has an excellent and comprehensive list of state-by-state resources you can take advantage of, covering topics ranging from Medicaid, to financial planning, to assistance with daily life.
Middle-stage dementia often lasts the longest, and marks an important shift in caregiver needs and responsibilities. Not only will you have to create systems and structures that function well over time, but the pressure of caregiving will require you to take your own health and wellbeing increasingly into consideration as part of the caregiving experience.
Because middle-stage dementia typically involves complications for communication and subsequent frustration and anxiety, it’s important to educate yourself on dementia-specific behavioral and communication strategies. Caregiver.org provides a great deal of insight for caregivers who are currently working with a loved one with middle-stage dementia.
Finally, it’s important to start looking for caregiver wellness resources and support communities that will enable you to manage self-care as things become increasingly stressful and your burden increases.
I-Ally is a community of caregiving professionals and at-home caregivers who can provide you with the quick tips, expert advice, and emotional support you need to make your caregiving experience one of empowerment, fulfillment, and joy with your loved one.
The final stage of dementia can last weeks or even years, and it’s where caregiving reaches its greatest level of involvement. People suffering from late-stage dementia usually require 24/7 care, and may struggle with eating, mobility, a compromised immune system, and general hygiene.
This is the stage when caregivers are also experiencing their highest stress levels, personal difficulty, logistical challenges, and financial strain. A loved one’s interactions may be limited to listening to music, being read a book, or simply sitting outside together. It can feel very lonely for a partner or spouse who is disconnected from the wonderful, interactive person they dedicated their life to.
Because of the burden, this is when many families have to make the decision to engage professional care and hospice services. The National Hospice and Palliative Care Organization (NHPCO) is an invaluable resource for connecting families with the services for managing late-stage dementia.
Managing Dementia Caregiving With Community
Loneliness, anxiety, and isolation are common experiences for people involved in dementia caregiving. Resources are key, but finding the right online community of professionals and caregivers can be the difference between hanging on by your fingernails and living your best, most fulfilling life.
I-Ally is dedicated to providing caregivers—particularly younger caregivers—with the information and support they need on their caregiving journey. Visit us, and find out how to make I-Ally a vehicle for your caregiving empowerment.