Her family sat on either side of her. Her husband held her hand, and her daughter held the eyes of our team. The diagnosis of Alzheimer's dementia was just given, and the weight of the words hung heavy in the air.
After thirty years, this part never gets easier for me. It's the beginning. The beginning of grieving. The beginning of choices and hard decisions.
In the many family programs that I run, the two most common decisions that I hear families struggle to make are when to move from providing care in the home to moving into a facility. And then how to how to choose the right senior care facility for them.
The journey of providing care and support to a loved with a diagnosis of dementia is often long, confusing, and at times, exhausting.
Here are a few strategies to consider to make the process easier:
1) Early Evaluation and Diagnosis:
It is usually the family who first notice signs of forgetfulness or changes in language and behavior. Our brain is designed to last as long as our bodies. While it is true that with the aging process, we are more vulnerable to needing longer to process information. But actual memory loss is not a sign of aging but rather a sign of disease.
Research is clear that early diagnosis of dementia is vital for management and the preservation of existing brain function. It is often a critical step for families to begin long term planning early before a crisis occurs. Families should start by initiating the conversation with their parent's primary care physician and seeking out experts in the geriatric field if needed.
2) Providing more Oversight and Supervision:
As adult children, it is often difficult to shift the role of a child to a caregiver of a parent. Issues of privacy, independence, and past family dynamics can make it hard to navigate the task. However, most adult children report that they waited too long to intervene before a "crisis "occurred. Seniors with early stage symptoms of dementia can be vulnerable to financial exploitation through mail fraud or exposure to "friends" who financially, physically, or emotional abuse them.
Communities have begun to pull together to identify seniors at risk for abuses, including training programs for bankers to recognize potential cases of exploitation by observing and recording unusual behaviors. Also, training programs have begun in some communities to educate employees who work in restaurants, beauty shops, and libraries where seniors tend to visit. The programs are designed to identify vulnerable at-risk seniors. The more educated eyes in the community and the family, the more likely abuses will be detected early.
3) Preparation of Legal Documents:
It is essential to make sure that legal documents are in order. Seniors should have a power of attorney for health care and finances in place. These documents will assist adult children in surrogate decision making when needed. Many attorneys specialize in senior care that can help with long term care planning.
4) Meet as a Family:
Family tension and discord tends to reach its peak under periods of stress. Ideally, families should meet with parents to talk about long term care planning, including healthcare issues, executing a living will, financial decisions, relocation to assisted care, etc. A family that is cohesive and thoroughly educated about a marked decline in a parent tends to make the best decisions.
5) Educate Yourself about Senior Services:
Before the crisis, educate yourself as a family about services available in your community. Many agencies provide medical and non-medical supportive services in the home, adult day care programs, senior centers, assisted living, dementia care specialty centers, and long term care nursing homes. It is recommended that you tour facilities and programs with specific questions to make decisions regarding current and future services that may be needed.
Suggestion for touring
• For-profit versus non-profit facilities. Before visiting a facility, find out if it is a non-profit or for-profit facility, which is often an important distinction to consider. In general, for-profit communities are often part of a large national chain. They are a business that is designed to turn a profit with responsibilities to their stakeholders and investors. In contrast, non-profit communities are often affiliated with mission-driven organizations and typically reinvest money back into their communities. Many families appreciate the quality and commitment to a mission over the profits for stakeholders. However, the majority of the senior care market is for-profit, and often, families neglect to ask the question. Know the mission and business structure of a community before your tour.
• Tour. Tour a facility at different times of the day and days of the week. Observe care on the weekends and evening shifts, which will give you a clearer picture of the overall quality of care provided in the community. Ask to speak to other family members.
• Dementia Training. Alzheimer's disease is a progressive and terminal disease. Before you place a loved one into a facility, ask specific questions about their ability to provide care for all facets of Alzheimer's disease, including cognitive, emotional, behavioral, and physical changes. Ask how decisions are typically made regarding moving residents from one level of care to the next, including into a memory care unit or discharged from the facility?
Many senior care communities are beginning to add memory care units, but not all are created the same. Inquire about the level of dementia training for all staff, not just those who work in a memory care unit. What type of training is provided? If it is merely online, content learning versus in the hands-on facility training that is supported and reinforced by leadership.
• Dining services are an essential component of senior care. Therapeutic dining is different from hospitality dining services. Inquire about the facilities dining program—some communities provide this service and others contract with outside dining providers. Plan to eat in all of the dining areas in the community. Is the food and dining experience consistent across all levels of care?
6) Caregiver Support: Reach out for support.
Take care of yourself with good nutrition, exercise, support groups or friends who can provide you respite. Caring for somebody with dementia should be viewed as a marathon and not a sprint. Pace yourself. For more information, find us at www.doctorlori.net