Family caregivers for someone with Alzheimer’s disease have a long and often exhilarating and heartbreaking journey ahead of them. The ‘visit me now’ moments alternate with challenging behavior, fast-growing needs for care, and seemingly insatiable patience for responding to the same question or demand 150 times per day. For many family members, a primary task is therefore to build a good support network for providing Alzheimer’s care over the years of the progressive disease. Collaborative home care is an approach that can facilitate this process, by integrating formal and informal resources and offering family caregivers help to create a good quality of life both for the person with Alzheimer’s and for themselves. This article will describe several ideas that might help to create and sustain a support network for Alzheimer’s families providing the best possible care.
Understanding the Need for a Supportive Network
Alzheimer’s disease doesn’t just affect the diagnosed person, it impacts their entire family. Caring for the person, balancing medical treatment and daily living needs (eg, dressing, eating, taking medications), and tackling the emotions surrounding the disease is a complicated task, and having a support network can help:
- Sharing the burden: distributing caregiving responsibilities among family members, paid caregivers, and community support prevents caregiver burnout while providing comprehensive care.
- Emotional Support: Family, friends, and support groups can help caregivers deal with the stress and emotional strain of caregiving.
- Offering adaptive help: Adaptive help could include professional carers or community resources whose practical services include help with medical needs, basic tasks, or respite care.
- Improved communication: Coordinated care can enhance communication among caregivers through the same channels of communication, thereby making sure that everyone is informed about the situation and moving in the same direction.
Building a Supportive Network
Creating an effective supportive network involves several key steps:
Involve Family Members
- Enlist Allies: Ask willing and helping hands in the family to support with caregiving, so long as it is clear what roles, responsibilities, and expectations everyone holds and understands.
- Have Specific Roles: Define roles for each family member, whether it’s the medical appointments point-person, the finance manager, or the emotional rock star. This reduces confusion and overlap.
- Have Regular Family Meetings: Have regular family meetings (with perhaps a child-friendly agenda) to discuss the care plan, update one another on how you’re doing, and deal with any of your concerns. Good, clear communication is key.
Engage Professional Caregivers
- Pros: Consider paying for ongoing professional support for that elder. Nurses, home health aids (especially those who have special training in Alzheimer’s care), and therapists make a huge difference in the level of care delivered.
- Work with professional caregivers to create and implement a care plan based on the individual’s needs. Review and revise this plan with the caregivers at regular intervals as the disease progresses.
- Find Specialized Services: Try adult daycare programs and respite care, which provide additional relief for family caregivers.
Utilize Community Resources
- Get connected with other support groups. Join online or local groups of caregivers for Alzheimer’s patients and get advice, support, and community from other caregivers.
- Tap educational resources: Alzheimer’s organizations offer educational programs and workshops on topics such as how to manage the illness, cope with the stresses, and care for the person.
- Look Into Financial and Legal Support: Get help with financing and legal matters: there are financial planning resources and ways to use legal teams to assist with insurance, benefits wills, and estate preparation that are all related to Alzheimer’s care.
Foster Communication and Coordination
- Use Technology: Utilize technology to enhance communication and coordination among network members. Tools such as shared calendars, communication apps, and care management platforms can help keep everyone informed.
- Maintain Open Dialogue: Encourage open and honest communication among all members of the support network. Address any issues or concerns promptly to ensure a smooth and collaborative caregiving experience.
- Document Care Plans: Keep detailed records of the care plan, including medical information, medication schedules, and caregiver notes. Documentation ensures continuity of care and helps in coordinating efforts among different caregivers.
Overcoming Challenges in Collaborative Care
While building a support network can have many benefits, it can also come with struggles. The following is a list of common problems related to building a support network and suggested ways to deal with them.
Family Conflicts
- Foster Mediation: When conflicts arise between family members on how to take care of a parent or sibling, then consider bringing in a mediator or counselor to help resolve conflicts and work collaboratively on caregiving.
- Respect the Common Goal: Steer family members back to the goal of jointly providing the best care for the patient. Focusing on the common goal of best care, rather than on the personalities of family members or specific behaviors of the patient, helps reduce conflict among extended family.
Caregiver Burnout
- Offer Respite Care: For families providing care at home, offering a family caregiver a break is an important strategy. This might include occasional ‘time off’ or a break from the demanding caregiving responsibilities. Respite care services are available to help someone provide a needed break for the caregiver.
- Promote Self-Care: Encourage caregivers to take care of themselves and seek assistance when needed. Support groups and counseling are available to help caregivers cope with stress and avoid burnout.
Coordination Issues
- Develop Care Management Systems: Use care management systems to improve coordination among caregivers. These are increasingly available and can track appointments, medication, etc.
- Establish Communication Channels: Communicate clear communication channels to all members of the network.
Financial and Logistical Concerns
- Plan financially: Devise an approach to cover the costs of care associated with the disease, such as insurance, government benefits, and other community assistance programs.
- Consider logistics: What are your transportation needs? How will you get to medical appointments? If your home isn’t accessible, what home adjustments need to be made? Are there community resources or organizations that can help?
Benefits of a Supportive Network
A well-established supportive network provides numerous benefits for Alzheimer’s families:
- Improved Care Quality: Through collaborative care, the individual with Alzheimer’s will receive high-quality and consistent care, often resulting in an improved quality of life and a higher level of functioning.
- Reduced Caregiver Stress: Distributing responsibilities and gaining access to resources helps reduce caregiver stress and the risk of burnout, allowing caregivers to carry out their responsibilities in a balanced way and maintain their health.
- Better Communication: Network members communicate more effectively and are better informed about the individuals’ care plans and status changes.
- Greater Support: Family, friends, and mutual-help groups provide essential emotional support for the emotional trials of caregiving and a network of connection.
If we truly wish to avoid the scenarios described above – to provide effective, dignified care to our loved ones – a point person must develop a network of support, including (when possible) the loved one’s family, paid care workers, their community, and the person living with the disease. Communication needs to be encouraged and accomplished between and among all involved parties if we wish to successfully care for those living with Alzheimer’s disease.
To begin with, deal with some of the more typical issues and make sure to take advantage of the benefits offered by support groups. Recognizing that caregiving is in constant flux—and that there will be both good days and bad—is one of the best ways families can keep it sustainable. Ultimately, caregiving for Alzheimer’s disease is about being loving and attentive through all the ups and downs. With perseverance and compassion, most families can keep the patient at ‘home’, providing good care, and working to keep the family intact as much as possible.
