Let’s Talk About What Matters: Caregivers and Dementia
Image courtesy of Samaritan.
BY CHRISTINA RUBANO, LCSW, ACHP-SW | Certified Care Navigator
Dementia Care Program Coordinator, Samaritan
Last month in this column we talked about the truths of hospice care. This month let’s talk about understanding dementia and the impact that diagnosis has on the person as well as on their family and caregivers.
Today, more than 7 million Americansare living with dementia, and nearly 12 millionprovide their unpaid care. The challenges of managing health care, providing constant support, and dealing with the behavioral and psychological symptoms of dementia can present a significant burden for caregivers.
When dementia enters a family’s life through memory lapses, confusion or behavioral changes, it affects everyone. It’s not just about the person living with dementia. It’s about the whole family, and how they’re going to manage the emotional, physical and logistical realities of what lies ahead.
There are several types of dementia—Alzheimer’s, Lewy body, frontotemporal, vascular—and they each show up differently. Some affect memory, others affect behavior or movement, but they all change how the brain works, until eventually, a person can’t care for themselves at all.
Recognizing dementia in its early stages can be challenging, as symptoms can be subtle and often mistaken for normal aging. However, there are key signs to look for.
- Does your loved one have trouble remembering recent events? For example, difficulty recalling what they had for breakfast or who they spoke with on the phone. Or making up details to fill in the gaps of what they can’t remember?
- Does your loved one have difficulty writing, spelling simple words, or confusion with basic math or dates? Or have trouble contributing to or following a conversation?
- Does your loved one care much less about or withdraw from activities that once were of utmost importance? For example, hobbies like cooking, socializing, and shopping.
- Does your loved one have no idea how to retrace steps when an item is misplaced? Or do they put items in unusual places like shoes on the table?
- Does your loved one show signs of poor judgment? Do they spend money in an uncustomary way? Do they pay less attention to their appearance or grooming habits?
If you notice these signs, it is crucial to seek medical advice. A professional evaluation typically includes cognitive tests, medical history, and possibly brain imaging to rule out other conditions. Receiving a diagnosis can be overwhelming but understanding the type of dementia can help your family make informed decisions about care and treatment options.
Early connection with a care team is essential because planning for the unique care and financial needs encountered during a dementia journey is vital. A qualified care provider will help you and your loved one navigate the next steps. Who will make decisions when the patient can’t? What care will be needed as memory declines? Where will that care occur and who will provide it?
We all understand that these are hard conversations to have but having them early lets the patient be part of the process. When you’re able to get your loved one’s wishes in writing, you’re able to honor their goals for care and quality of life. It’s not just about documents. It’s about respecting the person.
Look for a dementia care provider who will support you through:
- Care Coordination: Comprehensive care planning based on your unique needs and goals of care
- Caregiver Education and Support: Guidance on caregiving, understanding dementia, and support groups
- Dementia Care Line: 24/7 availability whenever you have questions, concerns, or need assistance
The following list touches on items to remember as you prepare your home and your heart when dementia touches someone you love.
- Create a Safe Environment by removing hazards and installing safety features.
- Label important areas and restrict access to dangerous areas.
- Maintain a calm and familiar environment.
- Establish a routine.
- Encourage engagement.
- Use positive language – agree, divert, reassure, repeat, encourage, and reinforce.
- Preserve dignity by using age-appropriate terms.
- Make caregiver emotional support and well-being a priority.
Dementia caregiving is a unique labor of love. Caregivers lose their loved one slowly and often find the act of caregiving to be isolating as dementia progresses. Many caregivers don’t have money to pay for extra help at home, so they push themselves until they’re overwhelmed or end up in the hospital. Your health and emotional support need to be priorities. There is no shame in asking for help in caring for your loved one.
Look for a provider that can deliver seamless care across the stages of dementia.
Samaritan, for example, provides primary care at home and palliative medicine, supports caregivers with social work visits and friendly callers, and helps connect caregivers with support groups. Robotic pets provide people living with dementia and their caregivers with companionship and a sense of purpose when caring for a real pet isn’t practical.
Starting this month, Samaritan will also provide services through GUIDE, a national Medicare model designed to improve dementia care. Families may qualify for additional services through GUIDE, including respite care, along with Samaritan’s 24/7 phone support from trained dementia navigators. Family caregivers will have guidance and support, even during those late-night hours when fear and confusion set in.
Samaritan has always been about meeting people where they are, and with dementia, that means staying present, planning ahead and showing up with compassion day after day.
Samaritan, widely recognized for its expertise in palliative and hospice care, has expanded over the past 45 years into a leader in advanced care for serious illness. As dementia gradually progresses, often over five to eight years, Samaritan surrounds patients and their loved ones with a circle of care through Samaritan Care Pathways, providing seamless transitions of care.
If you’re worried about dementia and your loved one, even if it’s just small things, call us at (856) 596-1600. You don’t need a diagnosis to ask for help.
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