An estimated 5 million Americans live with Alzheimer’s according to the National Alzheimer’s Association. For family members or paid caregivers, handling the confusion, irritability and angry outbursts of Alzheimer’s or dementia patients can be exhausting, frustrating and lead to emotional breakdowns and family discord.
Your loved one has just been diagnosed with dementia. You feel numb, scared, confused or even denying that such a thing could happen to someone you love. It feels like everything around you has stopped, your emotions are overwhelmed and it just can't be real.
What's next? Who do you turn to? How should you feel? And what do you say to others?
It seems everyone has an opinion. Everyone has a way “they would do it”. But make no mistake about it, whether it’s a parent or a spouse, you will be in for an experience that even those with the strongest resolve will struggle with.
Here's the reality, there really is no right or wrong way to feel. It will take
time to accept the diagnosis and everything that comes with it. You will talk with other family members and healthcare professionals, seeking answers or just some solace from the storm that has raged around you.
After the shock wears off, you slowly begin to accept the diagnosis. Then you educate yourself on dementia and learn how to move forward.
You will learn that dementia is not a normal part of aging and it affects everyone differently. Your loved one may have problems with memory, thinking, concentration and language. They may become confused or struggle to make sense of what they can see or hear. There may be changes in mood, emotions and behavior.
Unfortunately, you will also learn that dementia is a progressive condition, meaning that the symptoms will get worse over time. But you also find out that there are many people who continue to live well for quite some time.
Then comes time for planning. Your healthcare professionals will explain the course of the disease and the best way to treat it. But, medical services are just the beginning of preparing for the journey of dementia, there are also some very important legal considerations that must become a part of the planning process for someone with this diagnosis.
“When a loved one receives a dementia diagnosis, their family is devastated,” said Attorney Connelly. “After coming to grips with this news, then comes the work of taking care of the business of dementia, adding additional stress to an already overwhelming situation.”
And the business of dementia can be cold. There are bills to be paid, healthcare decisions to be made, planning that must occur for long term care which includes healthcare coverage.
“When putting together a comprehensive plan for dealing with a dementia diagnosis, there are many pieces of that puzzle – organizations and disciplines -- that must come together in a collaborative effort to support not only the dementia patient but the family as well,” stated Connelly. “Those who work with dementia patients and their families need to be unwavering advocates for them, regardless of their living situation, diagnosis or means.”
With dementia care becoming a larger and larger part of services for seniors, Connelly Law has put together a program called Safe Harbor Services for those who have received this diagnosis. Connelly, who is an experienced sailor and licensed ship captain, says there are many parallels between the ocean and the journey of dementia.
"’Any port in a storm’ is a saying with nautical connotations, meaning that
in an emergency situation, any solution will do, even one that is normally unacceptable,” said Connelly. “Indeed, a diagnosis of dementia is an emergency situation, but there are acceptable solutions, there are safe harbors in which to seek refuge.”
To that end, Connelly Law is committed to providing clients with a safe harbor, making the process of planning for the future of those diagnosed with dementia as pain-free as possible. We hold the philosophy that dedicated customer service and individual attention can actually make this frightening and difficult process empowering by providing some predictability to the journey of dementia.
Connelly Law will assist you in understanding the legal, financial, and social implications of dementia. Our team not only has technical knowledge about the legal and financial needs of individuals and their families, but we also have personal experience with this condition as multiple members of our staff have lost loved ones to dementia or have loved ones living with this condition.
“The sooner a family seeks help from an elder law attorney or senior care professional, the greater the number of choices available to them for decision-making and care,” said Connelly.
“We don’t take a cookie-cutter approach with our clients, instead, we look at the issues from a variety of perspectives, understanding that each individual and each family has unique and very personal needs.”
The areas that Connelly Law can help with includes legal care, such as durable power of attorney, healthcare proxy, a living will, living trusts, DNR and MOLST orders. Financially, the firm offers daily money management and other fiduciary services that can help protect the senior from exploitation. And from a healthcare perspective, the office can help with long term care planning including medical assistance/medicaid applications.
The Virtual Dementia Tour (VDT)
“These are concrete services that we offer,” said Connelly. “But, we also have decided to provide a training – free of charge -- to those who work with senior as well as family caregivers. This training is called Virtual Dementia Tour, or VDT, aimed at helping caregivers develop empathy for the plight of someone with dementia.”
Caring for someone with dementia truly impacts every aspect of a person’s life. As they lose one ability after another, a caregiver faces tests of stamina, problem solving, and resiliency. Maintaining a strong emotional and physical well being is not only crucial for the patient, but for the caregiver as well.
“Preparing yourself, understanding a dementia patient’s experience, and seeking support from others can help someone succeed on the caregiving journey and the reason we are offering this training,” said Connelly.
Although it's impossible to truly understand what it is like to have dementia, this unique training program offered by Connelly Law and Continuum Care of Rhode Island can bring the participant as close as possible to experiencing the chaotic sense of mental decline faced by those with this disease and the frustrating struggles they face daily.
VDT, developed by Second Wind Dreams, allows an individual to experience
the difficulties of day to day living for someone with dementia from the first diagnosis to the late stages of the dementia disease process, Participants will be performing tasks and exercises that are essential for professionals, caregivers and family members to experience.
VDT has been called a game changer in helping care givers understand what person-centered care entails. In fact, research conducted by Second Wind Dreams found that VDT training in senior care facilities resulted in a “reduction in the use of psychoactive medication” once staff had a better understanding of the behaviors associated with dementia.
Participants begin the tour by donning special equipment, such as special glasses, headphones, altered gloves, clothing and shoe inserts. Once this is completed, they are ushered into a dark room where a strobe light flashes and a list of tasks to perform are given.
These tasks may include finding a matching pair of socks, hanging up a coat, pouring a glass of water and opening medication bottles. Although it may seem simple, when a person is lacking vision, spatial awareness and altered perceptions, completing them may be close to impossible.
“As participants enter the room, they are bombarded with information, overwhelming their thought processes creating a sense of distress,” states Attorney RJ Connelly. “Things that seem simple suddenly become massive tasks when our sense are overwhelmed. They become confused, isolated, intimidated, vulnerable and even angry, helping them understand what someone with dementia may be experiencing daily.”
By going through the tour, those who experience it begin to examine how they would want to be treated in similar circumstances and encourages them to use what they have learned to better treat those with dementia.
“Here’s the bottom line, for those working with residents who have dementia, we want this training to give them the tools necessary that will reduce the number of negative incidents they may experience and increase the personal connection they have with the residents,” stated Connelly.
The training includes much more than just the VDT experience, it also includes an in-depth debrief session to help staff and caregivers understand why some residents have challenging behaviors. All VDT facilitators are specially trained by Second Wind Dreams and many have clinical backgrounds in senior care and counseling.
Providing services to family members of those who have received a dementia diagnosis is a primary focus of Connelly Law Offices and because of that, Attorney Connelly has set up a private training area in his Pawtucket office to offer this presentation to the loved ones of those who receive this diagnosis.
“We are offering this training free of charge to nursing homes, assisted living programs, senior centers, churches, law enforcement, fire departments – basically any organization or agency that works with seniors on a regular basis,” said Connelly.
To learn more about our VDT training, please click on the box below:
Those interested in setting up a training, or experiencing a family training at our office, can contact Connelly Law at 855-724-9400 and ask for Don Drake, or they can email us at email@example.com.
Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.