September is World Alzheimer’s Month, and Dementia Care Specialists at Crisis Prevention Institute would like to take a moment to share ideas that may aid you as you help people with dementia.
Dementia is one of the major causes of disability and dependency among older people worldwide. The global average life expectancy in the USA today is higher than in any country back in 1950. Put those two facts together, and it’s no wonder that we have an explosion of older adults living with dementia. (Of these, Alzheimer's disease is the most common, contributing to 60–80% of cases.)
Adding another layer of complexity is figuring out how to help people with dementia and their loved ones navigate living with this chronic, progressive diagnosis in a (post) pandemic world.
The signs and symptoms of dementia can be a significant source of fear and distress, and many desire support in leading meaningful and rewarding lives, maintaining independence, enjoying activities of interest, maintaining social relationships with others, and being connected to familiar environments and communities. To help people with dementia requires care, services, and supports that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens.
We may start to help people with dementia by supporting them in decision making and engagement in pleasurable activities; more extensive support in basic activities of daily living, such as eating and bathing, follows; and potentially moving on to complete supportive care. Persons living with dementia co-manage their care with—or rely on the support of—a wide range of care partners and caregivers, including spouses, other family members and friends, and direct care workers in homes or residential care settings, with the intensity of co-management changing over time.
Those who help people with dementia often experience positive aspects of caregiving, including a deeper appreciation for life, satisfaction with living according to one’s values and sense of duty, and strengthening of their relationship with the person living with dementia. At the same time, however, caregivers also face higher risks to their physical and mental health, family conflict, social isolation, and negative consequences for their finances and jobs. Together, persons living with dementia and their care partners and caregivers need supports and services to help them both live in a rewarding way.
How can you, as care providers, not only help people with dementia and their families but expand your reach to the greater community?
Create a Memory Café
A Memory Café can be a bridge between the greater community and residential community, or it can simply be a way to help people with dementia on your own campus. A Memory Café is a safe and comfortable space where caregivers and their loved ones can socialize, listen to music, play games, and enjoy other appropriate activities. They provide mutual support and exchange information. This by itself is valuable if for nothing more than to obtain information about additional resources.
It's a great environment where you can help people with dementia and their families enjoy the company of those with similar things in common.
Offer Respite Care
Before the pandemic, respite care was an option to give the caregiver an opportunity to rest and recharge. Respite care was not available during the height of the pandemic. As organizations begin to slowly open there are guidelines already being put in place to provide and receive respite care safely. Visit the Administration for Community Living to access the guidelines for respite care.
Offering respite care can be an initial introduction for the family to your care community. It’s your opportunity to start building trust with a family member who may want to place a loved one in care but feels anxiety or guilt doing so because they haven’t seen your care in action.
Offer Support and Education
It truly takes a village to help people with dementia and their family members. Your solution could be two-fold:
1) Offer a support group open to people in the outside community that addresses the emotional side of having a loved one with dementia.
2) Offer educational sessions about dementia and what the person and family can expect to happen as it progresses.
The support group allows families an outlet for feelings of anger, sadness, or even denial in a safe space with other people going through the same thing. It builds bonds between families and helps them not feel alone.
Regular education sessions can help the family member understand what their loved one is experiencing now and what they might expect in the future. It can also provide valuable insight into how to make visits or have outings with their loved one run more smoothly. This builds even more trust as it means your staff are experts in this disease and can give the family practical help.
Focus on the Person First
If the family decides to move their loved one into your community, start with the focus being on getting to know the person with dementia. The family member can play an important role, even before the individual moves in, by communicating to the senior living staff their loved one's needs and preferences. The family member can still feel they have an important role in their loved one’s care, and, at the same time, your care community will learn about the loved one’s personhood in addition to their medical needs. This demonstrates your commitment to person-centered care and instills trust in the family member that you are the “right choice” for long-term care.
A way to gather personhood information effectively is to use our Life Story Tool. Your care community can gain the family member’s trust by using the information from the Life Story to develop the person’s care plan which all team members are committed to delivering. Once a family member sees their loved one’s preferences and routines happening in daily care, they feel reassured that their loved one’s life is being honored daily. Feeling a loved one is being cared for as good or better than they can at home gives family members peace of mind.
The more avenues of communication you can provide—newsletters, emails, Facebook posts, phone calls—the better. It’s an opportunity to help people with dementia and their families feel in touch as you continue to demonstrate your person-centered care.
Introduce yourself to the family when they visit and let them know how you help support their loved one. Share a story of something their loved one did recently that reflects knowledge of the person’s preferences or routines to demonstrate how the focus of care of your community is on their loved one’s personhood and not just their loved one’s medical needs.
Make Family Celebrations Easy
Ease the burden of holidays or other celebrations by offering special events that families can attend. Hosting Thanksgiving dinners and Christmas parties takes a huge burden off the family and promotes a more relaxed holiday season for the person in care and their family members. The family is reassured their loved one can engage in the holidays safely and all the family must do is show up!
Providing spaces for private family gatherings allows the family to continue their traditions and celebrate special family events such as birthdays, baby showers, or graduations. This also promotes feelings of home versus institutional living which could decrease the loved one’s desire to leave the community because now they feel “home.” This can relieve family members’ feelings of guilt from placing their loved one in care.
Walk in Their Shoes
Practice understanding and empathy. Many times, the person with dementia is a parent or spouse of the care giver. Imagine one of the most important people in your life battling a chronic disease that is stealing their memories. Sometimes, even stealing the memory of who the family member is.
We need to be understanding when a family member is feeling guilty, angry, or even accusing us of poor care. Don’t take it personally. That person is overburdened with managing their life and their emotions around what is happening to their loved one. We can influence and sometimes de-escalate the upset behavior by remaining calm and sympathetic. This, once again, demonstrates your team’s expertise and experience in dealing with families going through this journey.
Organizations such as the Alzheimer’s Association have resources and tips on managing care during the pandemic, caring for a loved one either at home or in a care community, how a caregiver can take care of themselves, and how to get community-based supports to name just a few. The Alzheimer’s Association offers a 24/7 hotline for help with challenges.
Research tells us one in three seniors die with dementia. Increased age is the main risk factor for developing dementia and, due to the average life expectancy being so high, we have an explosion of older adults living with dementia. The burden of care to help people with dementia increases as the disease progresses.
People can thrive living with dementia! Let’s create a world where living with dementia can be meaningful and fulfilling for the person living with dementia and their loved ones!
Sharon Host, OTR/L, is a Senior Consultant and Global Professional Instructor with Dementia Care Specialists at Crisis Prevention Institute.