COLORADO CAREGIVER’S GUIDE TO DEMENTIA RESOURCES | by
Denver fosters a large community of people with personal ties to memory loss, who have dedicated their life’s work to this cause. Whether you are living with dementia or Alzheimer’s, are a caregiver, or love someone living with one or the other, we hope this guide can serve as a bridge from you to available resources and the many people in this field ready to support you.
The title of “caregiver” often does not carry the weight of all that it actually entails, in both the rewarding and challenging moments. We have yet to find a cure for these diseases, let alone fully understand them, although innovative progress regarding treatment is being made every day. Caretakers continue to demonstrate how with compassion, patience, education, advocacy, and guidance, those living with dementia and Alzheimer’s, as well as their families, can still live a fulfilled life; amidst inevitable changes.
While these diseases might feel like uncharted territory and a journey of isolation, others have walked this path and you are far from alone. Inside this guide you will find stories and insight from caretakers, researchers and thought leaders.
MEETING SOME OF DENVER’S FINEST EXPERTS
“Care for your own personal well-being along the way. Find your tribe of people who understand your journey and who can support you through every stage of this illness in a caring, compassionate and non-judgmental way.”
With more than 18 years of experience, Kay Adams supports and empowers individuals and care partners impacted by dementia. She helps people ‘navigate the wilderness’ of a dementia diagnosis with confidence, clarity and connection. Adams’ unique and specialized work experience has equipped her with the expertise, commitment and compassion to take on what she calls her, “passion, mission and life’s work”.
Adams has witnessed the emotional, physical, psychological, functional and financial tolls taken during early, mid and late stages of dementia. “People commonly mistake dementia as a short-term memory problem, leaving care partners unprepared to deal with the impact of this arduous journey and complex illness,” says Adams.
“Caregivers may be at a higher risk of increased depression, anxiety, substance abuse, social isolation and premature death as a result. Care partners often require compassion, validation and an understanding for the caregiving journey,” she says.
Adams provides disease education, strategy, support, resources, and assistance with advanced care planning to care partners. Individualized attention, emotional support, coping strategies and programs are designed to improve communication, relationship dynamics, and caregiver confidence, while reducing stress and isolation from early to late stages of the disease.
Jane W. Barton
Cardinal, LLC, Author of Caregiving for the GENIUS
Spiritual director and Certified Senior Advisor. Master degrees in theology & pastoral care, MTS, MASM, CSA
National speaker, writer, hospice chaplain, spiritual director, and educator specializing in caregiving, aging, and end-of-life care
Jane W. Barton, author of Caregiving for the GENIUS, is a passionate national speaker, writer and listener. As the founder of Cardinal, LLC, she provides educational programs, books, videos, podcasts, and blogs to assist people in confronting the daunting challenges posed by aging, serious illness and the end of life. Barton is well versed in the areas of grief and bereavement, caregiving, hospice and palliative care, change and transition, and spirituality and health. She presents innovative, transformational programs to community members, healthcare providers, pastoral caregivers, clergy, funeral service providers, and national audiences. Barton collaborates with AARP to offer educational programs for personal and professional caregivers throughout Colorado.
With a background in public health, Nadine began her most important role as a 15 year caregiver to her mother. When that journey ended, Nadine knew without a doubt that caregiving consulting, education and coaching would be her life’s work. For the past eleven years she has care managed, coached and supported family caregivers across the country, fifty percent of whom are caring for those with a co-morbidity that includes some form of dementia.
She is the author of “Tears In My Gumbo…The Caregiver’s Recipe for Resilience” and Prayers In My Gumbo, The Caregiver’s Recipe for Peace, part of the multi-book “Caregiver Gumbo” series.
In launching this series, Nadine has also launched a movement she calls, “The Care-ocity” Movement where her mission is to spread the message of caring around the world. She invites individuals, organizations, churches and businesses to join her on this most important endeavor. She has recently launched the 10*10*30 Campaign – 10 Random Acts of Kindness, 10K Books to Caregivers in 30 Days.
Nadine hosts free, weekly “Calling All Caregiver Calls” for caregivers across the country. She offers individual, group and family coaching packages.
“When someone is dealing with cognitive impairment, they are doing the best that their brain can do to interact and keep themselves comfortable. We want to do what we can to set this person up for success by asking, ‘What does their brain have the capacity to do right now, who have they always been, and who knows them best so we can build up these pieces?’”
Jill Eelkema, founder of Western Care Partners, has worked with older adults in the nonprofit and health care sector for over fifteen years. As a majority of her clients are living with dementia, she is experienced with all stages of memory loss. According to Eelkema, one of the biggest challenges facing caretakers today is navigating collective decision-making within a family, especially when someone is unable to make decisions on their own. Through her work she hopes to help protect the dignity of those with memory loss while also ensuring their health, safety and welfare.
“I’m highly optimistic a breakthrough for Alzheimer’s/dementia is on the horizon. Diagnosis and clinical research advancements provide more hope than ever before. In the meantime, the Dementia Friendly Denver (DFD) team will decrease stigma in the community while assisting carepartners and their loved ones through education and support.”
As a not for profit initiative, (DFD) is a team of experts and leaders in dementia care, committed to improving lives through support, education, resources and community relations. (DFD) offers a free, one hour learning session to family carepartners and professional caregiving staff covering Alzheimer’s and dementia research, risk, warning signs, challenges and communication in caregiving.
JJ Jordan was a family carepartner for 16 years after three of four parents lived for 16, 14 and 11 years with Alzheimer’s disease. She recently completed a six year term on the Alzheimer’s Association board and volunteers as a public policy ambassador to Capitol Hill. As a thought leader, Jordan currently volunteers as the community chair for Dementia Friendly Denver and is the CEO of the Jordan Consulting Group where she teaches, speaks and consults on dementia topics.
“The best thing we can do to support someone with dementia is to avoid the three “c’s” –correcting, criticizing, or challenging them to do something that’s beyond their capabilities. It’s not that the person isn’t trying, it’s that their brain is physically unable to do the task that’s being asked of them.”
Caring for those with dementia and Alzheimer’s is what Amy Miller calls “close to home,” after being privy to three of her grandparents living with dementia. She emphasizes the importance of therapy for those with early stage dementia, citing that more than 40% of people with dementia struggle with depression. Miller explains that many people aren’t aware there is a grieving process for people with memory loss. She hopes to support people through this process by helping them adjust to their “new normal,” and to take charge by learning to advocate for their needs and communicate their wishes.
“Use your time and energy wisely. Bring in an expert to help you determine every possible option, talking through each situation, so that you make decisions with clarity and confidence. You deserve the support, as you support your loved one.”
The belief that elders should be celebrated and honored in society is the bedrock of Kelly O’Connor’s work as an elder care consultant and senior living advisor. Growing up, she lived in a multigenerational home, to which she attributes her values today. O’Connor says that the best care for elders begins with the family being educated and resourced well, which is where her work as a consultant is essential. She knows what it is like to have to make healthcare and financial decisions for someone else which is why she now specializes in educating families so that they can feel confident in their decisions.
“There is still a lot of life to live after a diagnosis. Focus on what the person living with dementia can do and not what they can’t do anymore. Join the person’s reality, go where they are. It’s futile and frustrating for caregivers to force ‘our’ reality. Logic and reasoning rarely work. We need to ‘time travel’ to the period the person is living in, in that moment. Reassure, model calm and respond to the emotions that are expressed.”
“One size does not fit all,” she says. “Care may look different at each stage and even can look different in the morning than it does later in the evening. As caregivers, we must adjust our approach to care and the way we communicate over the course of the disease.”
Wells’ first job as a psychiatric technician at a hospital inspired her towards a life-long journey in advancing initiatives in elder care. With a masters in gerontology, Wells has been working with older adults and their families for more than 35 years. Her focus has been on Alzheimer’s and dementia care for more than a decade. Wells leads 7 Colorado Alzheimer’s Association locations to ensure family caregivers and paid providers receive education and support at diagnosis and throughout the course of the disease.
The Alzheimer’s Association offers resources, education, support groups and opportunities to engage with others for both persons living with dementia and their care partners. “Dementia caregiving has unique challenges and now, more than ever, caregivers need guidance on how to give quality care that values the person provided the care,” says Wells. “Look for COVID-19 caregiving tips on our website.”
“This journey of Alzheimer’s is not a sprint; it’s a marathon,” she says. “You need to pace yourself. Caregiver well being is essential. Give yourself permission to let others help, it’s okay to admit you need a break.” For peace of mind, she emphasizes having advance care documents and a Plan B for caregiving in place. She also encourages friends and family to not be afraid of the symptoms and behaviors, which often cause people to walk away from a friendship or not visit a family member out of fear of the unknown.
“Family members don’t self-identify as caregivers. Not identifying as a caregiver means not knowing that help exists. A vast population of “helpers” feel isolated and alone.”
Pamela D Wilson took what she calls a “leap” into elder care over 20 years ago. Today, she speaks nationally on caregiving and hosts The Caring Generation® radio program — to reach audiences around the world. In her daily interactions she speaks with “helpful” individuals and encourages caregivers—family and professional— to seek support and education. After caring for her sick mother, she is familiar with being a caretaker while not identifying as one. Now, she hopes to encourage others to embrace this role in order to allow themselves to seek help and be supported.
LOCAL PROGRAMS & RESOURCES
A Little Help is a local nonprofit that connects neighbors to help older adults thrive. A Little Help brings communities together by connecting people in need of help with neighborhood volunteers who are willing to provide it. They recognize the desire of many older adults to remain in their homes as they age, but need a little community support to do so–whether that be transportation, yard and home chores, handy help, snow shoveling, and more. They also provide caregiver respite as a relief for families/support systems acting as caretakers. All members “pay what they can” to join the community on a sliding scale, which is subsidized by the generosity of supporters in the community.
A Wiser Mind believes everyone deserves an individualized approach to cognitive and emotional health, instead of a “one size fits all.” It recognizes the diverse needs of its clients with health conditions such as Alzheimers, depression and mild brain injuries by offering a treatment plan which caters to one’s interests, passions and past experiences. Each treatment plan is designed to improve each individual’s memory, reasoning and emotional wellbeing.
The Alzheimer’s Association is nationwide, with its Colorado chapter acting as the state’s largest provider of information and services. With funding from donors, all services are free including educational opportunities and training for caregivers, care consultation, support groups, early stage programs and advocacy. Alzheimer’s Association also offers a guide on end of life planning at all stages of end of life, including how to express your wishes, DNR, life-sustaining treatments, as well as funeral and burial plans. For 332,000 Coloradans affected by Alzheimer’s disease (76,000 living with the disease and 256,000 unpaid caregivers), the coronavirus (COVID- 19) has created new challenges. The Alzheimer’s Association can help with these free online resources to aid homebound Alzheimer’s caregivers.
Helpline is staffed 24/7 by trained professionals: 800-272-3900
Additional ALZ ASSOC resources:
- Know the 10 Signs. An Alzheimer’s Checklist
- Classes and training
- Online tools
- Caregivers’ forum and message board
- Your roadmap for approaching Alzheimers
- Alzheimer’s library and resource center
Meet Agape Healthcare Palliative Care Providers (click for video)
Meet Agape Healthcare Hospice Providers (click for video)
Colorado Care Planning helps Coloradans with advance directives and other legal forms. Its website provides a free roadmap for future medical planning. Advanced care planning guides you to make decisions about the care you would want to receive during a medical crisis. Decisions are based on personal values, preferences, and discussions with your loved ones.
Alumni Institute (720-405-6045) is a non-profit providing classes, socialization and nutrition for people with Mild Cognitive Impairment (MCI), dementia, Alzheimer’s and Parkinson’s. Members participate in art, music, exercise, and brain training activities to improve their cognitive function by doing activities that stimulate the brain and nourish the body.
Memory Care Kits (303-791-7323) are part of the library’s collection of nontraditional items that library cardholders can check out. The self-contained kits are designed to engage individuals with memory-related issues and their caregivers, and include an assortment of books, DVDs, books on CD, puzzles, games and more. Some kits also include a Launchpad that features different memory games.
The Memory Care Kits are designed to trigger special memories of life experiences and encourage positive interactions between those affected by memory issues and their caregivers. They can help spark conversations and make reminiscing fun, despite any age or generational gaps that might otherwise make communication difficult between caregivers and those with memory issues.
Each DCL kit is unique, with different resources in each one so caregivers have the opportunity to provide varied experiences for the people in their care. Books for caregivers are also included in the kits.
Each Memory Care Kit is self-contained within a sturdy canvas bag and can be checked out for three weeks at a time. The kits are a free resource available through DCL’s holds service.
The Denver Regional Council of Governments’ Area Agency on Aging (303-455-1000) has many options to address the needs of older adults 60+, their families and caregivers by providing information and referral services, case management and elder abuse prevention. Their Aging and Disability Resource Center for Colorado (ADRC) program helps streamline access to long- term services and support in the community.
In partnership with the Colorado chapter of the SPARK! Alzheimer’s Association, Denver Botanic Gardens offers an opportunity for participants with mild memory loss to enjoy hands-on garden related projects. The SPARK program integrates the participants’ multiple senses to inspire creativity and engagement. Events are free. Registration required.
Art & About Tours are designed especially for visitors with early-stage Alzheimer’s or dementia, and their care partners. During this monthly interactive and conversation-based tour, we invite visitors to experience, explore, and connect with art as well as each other. Themes change on a monthly basis. Tour and general admission to the museum are free for registered participants. Space is limited.
Easterseals Colorado’s Older Adult Day Services (OASIS) provide day time support and care, Monday-Friday, for individuals 50 years and older with intellectual, developmental and/or physical disabilities. The service fosters what it calls a “warm and inviting” environment, aimed at increasing social interactions among participants through daily activities including exercise programs, crafts and gardening, cooking classes and social and recreational activities in the community. They are working to find best practice for social engagement for people with intellectual/ developmental disabilities who are also experiencing memory impairment or dementia diagnoses.
Lutheran Family Services’ Older Adult and Caregiver Services (OACS) (303-217-5864) provides a wide array of senior care management programs for older adults, their families and caregivers. It’s services cover all stages of care and needs including assessments, consults, care management, caregiver support programs and older adult guardianship programs. With these services and counseling OACS experts work to help people to make decisions about aging.
Aging Resources of Douglas County’s (303-814-4300) goal is to optimize the lives and independence of older adults and allow them to live on their terms. It focuses on individuals who need assistance, but do not need 24/7 care in order to stay in their own homes. By incorporating help from volunteers, it is able to help with transportation, provide care guidance and facilitate educational events. Its three pillars for seniors’ independence in their own homes is dependent on transportation, companionship and help at home.
Opening Minds through Art (OMA)(513-529-2914) is an international art-making program for people with Alzheimer’s disease and other forms of neurocognitive disorders. The program provides opportunities for creative self- expression and social engagement for people with dementia. OMA also provides volunteers with opportunities to improve their attitudes toward aging through the weekly interaction with OMA program participants. OMA builds genuine friendships between people with dementia and volunteers as they engage in art-making.
OMA sites in Denver are Kavod Senior Living, Shalom Park and freelance OMA trained facilitator Elizabeth Stanbro.
The Memory Cafe (720-865-1123) is a Denver Public Library program for people experiencing memory loss, along with their friends, family, and caregivers. Amy DelPo, Administrator of Older Adult Services coordinates this fun, social, and safe place where people can just be themselves, without embarrassment over forgetting or not understanding. The Memory Cafe is a place to laugh, connect and relate. Each cafe starts with a program (like music, art and other enriching activities), followed by socializing over coffee and treats. Formal care or supervision not provided. Contact librarian Amy DelPo at firstname.lastname@example.org for meeting times and location.
Out & About Colorado (720-398-8945) provides group activities while being out in the community for both the diagnosed and their carepartners. Fun, meaningful, well designed full day outings for people with mild to moderate dementia.
Seniors’ Resource Center’s (303-238-8151) mission is to encourage independence of seniors within their own homes, by providing services which bolster their ability to do so. The services they offer range from transportation, in-home care and day time programs that facilitate life enriching activities. Information and advocacy are also important aspects of what they offer in order to promote seniors’ ability to “age in the place they call home.”
Swallow Hill Music (303-777-1003) partners with the Alzheimer’s Association to present its Musical Memories class. Music lovers can share in the fun at this free group class designed for people living with Alzheimer’s and their caregivers. Programs are facilitated by board certified music therapists.
The Conversation Project is a national initiative with free resources for how to have what many deem as difficult conversations, involving end-of-life care. While most Americans believe having this conversation is important, only about 32% actually do. Its Alzheimer’s/ dementia starter kit provides step by step guidance for families and loved ones of those living with Alzheimer’s or other forms of dementia, so that every person’s wishes for end-of-life care are expressed and respected.
The Knoebel Institute for Healthy Aging (KIHA)(303-871-6389) was established at the University of Denver in 2006 with a commitment to addressing issues of aging through research, education and outreach. With over ten research groups at KIHA, in the last three years it has published more than 50 peer reviewed publications on issues such as healthy aging, dementia, and more. Based on its interdisciplinary approach, KIHA “creates and implements solutions for aging issues.”
Resource to education, research, clinical care, community and upcoming events.
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