Let’s face it. Nobody wants to see their loved ones suffer or watch mom or dad lose their ability to be independent, make decisions, or no longer able to communicate.
But the reality is that most of us will be directly impacted by dementia in our own families as the population is living longer. As more of us will be assuming the role of caregiver for a growing aging population, we need to know how to cope and where to get help.
Being informed about the various causes and behaviors associated with dementia including its most common cause, Alzheimer’s disease, can provide hope in understanding what’s happening to the person and how to care for someone with dementia.
We had an opportunity to sit with Lauren Spiglanin, Founder of Family Connect Care to learn more about the challenges of caring for a loved one with dementia and to find out the family care resources available.
Understanding Dementia & Alzheimer’s
Dementia is a broad term used for a category of cognitive disorders associated with a long term but gradual decrease in the ability to think and remember. Dementia is caused by a brain disease or injury and is characterized by memory loss, personality changes and a decline in language, problem-solving and other cognitive skills which impacts the ability to perform daily activities.
Alzheimer’s is the most common cause of dementia. Alzheimer’s is a degenerative brain disease and because the nerve cells that allow a person to perform basic functions have been damaged, the disease displays symptoms of dementia and ultimately leads to the inability to perform basic bodily functions such as walking or swallowing. People at latest stages of Alzheimer’s require constant care and are bed bound. The disease is ultimately fatal.
Localista: What signs should people look out for and at what age are most signs exhibited?
Lauren Spiglanin: It’s difficult to figure out a diagnosis for dementia due to its different progressions and manifestations. It generally affects people in their 50s and 60s. Signs include not being able to do daily tasks, having difficulty communicating, not bathing regularly and looking disheveled. A loved one may start showing strange habits or spending money unusually. Dementia sufferers tend to get more confused in the evening so safety at night is also an important concern. It often takes seven to nine months before recognition of cognitive impairment.
Localista: What’s the biggest challenge that the caregiver faces?
Lauren Spiglanin: Generally speaking, families don’t know what to do. The kids of the person with dementia become lost in stress and overwhelm and don’t understand why mom’s behaving strangely. Usually patients in the early to mild stage of dementia don’t want help. The kids are taking over their lives and they lose their independence. Just like parents protecting their children, sometimes the kids of the person with dementia take on a parental role. It’s a delicate balance to respect their parents while at the same time taking care of them. The nature of the relationship becomes complicated.
According to the Alzheimer’s Association, it is expected that within the next 10 years, Alzheimer’s disease will increase by 40% affecting 7.1 million people. At this time, there is no treatment to cure, delay or stop the progression of Alzheimer’s disease. FDA-approved drugs temporarily slow worsening of symptoms for about 6 to 12 months, on average, for about half of the individuals who take them.
Practicing Care & Dignity
Everyday care plays a vital role in the health and quality of life for the person. This is not the time leave mom in bed all day staring at the television. Keeping a person with dementia healthy and fit helps him or her feel better. Healthy food and proper nutrition is critical for their well-being. Getting the person up and out gives them an opportunity to make choices and use the skills required to bathe and get dressed.
One can face challenges in communicating with someone with dementia. It’s important to state your message clearly and keep the conversation simple. Use simple words in the message, be patient about their response and observe their body language. Speaking with the person with care and dignity by matching and mirroring their tone, facial expressions and body language, creates a pleasant and respectful engagement.
Getting the person to talk about what they used to do or discussing the “good old days” can help engage them and create a healthy conversation.
Localista: What do people fail to realize when caring for someone with dementia?
Lauren Spiglanin: They fail to realize that the relationship they’ve had with their loved one all these years is not the same anymore. People who suffer from dementia are not cognitive of what they’re doing. They may be acting like a child or have significant behavior changes that can be upsetting to the families. You can’t argue with a person with dementia. It will only increase agitation, which leads to both parties being frustrated and that’s where the stress starts! Sometimes loved ones need to back off, as their own behaviors towards their loved ones can be agitating. It’s not about the kids. It’s about what’s best for mom or dad.
Localista: What is the best thing that caregivers and families can do for someone with dementia?
Lauren Spiglanin: I see many families waiting too long before they get help in placing a loved one in a facility that specializes in cognitive impairment. There are many reasons for this. The family may not be ready. The family dynamics are shifting and there is a very fine line between independence and respect. It’s often a matter of denial for many families. The sooner they accept the diagnosis and once they understand the memory impairment, they’ll have a better relationship with their loved one. I strongly recommend music therapy and reminiscing with mom and dad by doing projects that they used to do. I have a client with Alzheimer’s who was not doing well until we started having her bake again. [Lauren’s quick to point out that it was done in a safe and supervised environment.] She used to love to bake all the time and this was so good for her.
It is estimated that there are more than 5 million people living with Alzheimer’s disease in the United States. This includes 5.2 million people age 65 and older and 200,000 people younger than age 65 with younger-onset Alzheimer’s disease.
How Caregivers Can Cope
It’s easy to become frustrated and feel down when dealing with a loved one with dementia. Caregivers should seek out support from friends, family, caregivers and health professionals. Staying positive is very important and caregivers can help their loved ones at the same time by acknowledging the happy moments spent together and finding creative activities such as art, crafts and music, that they can enjoy together to help the loved one feel good and relaxed.
Localista: What is the most important thing that caregivers and family members can do to take care of themselves while dealing with someone with dementia?
Lauren Spiglanin: I strongly recommend joining a facilitated dementia caregivers group. It’s important for caregivers to share with they’re going through. We host a ‘coffee and compassion’ group where we focus on each person in the room and give them the opportunity to share [what they’re experiencing]. We often uncover feelings of guilt, failure or weakness for having to place a loved one in a care facility. The group helps caregivers know that they’re not alone in their feelings.
Localista: What do you recommend to caregivers and families to help them stay positive?
Lauren Spiglanin: Families need to let go and let professional qualified caregivers look after mom and dad. They will be okay. I tell my families that they need to take a deep breath and keep a positive attitude.
Localista: When should someone call a care manager?
Lauren Spiglanin: It’s ideal when families start seeing signs of memory loss so we can help them to start planning. Usually we get called in during crises such as mom or dad has fallen and they’re now bed-bound and other health issues arise. Once the signs are showing, it’s never too early to plan. It avoids stress in the long run. A care manager is there to help the patient with the overall care of the families as well by helping families understand what’s happening with mom or dad and how to maintain a healthy relationship. Care managers can also help transition patients to memory communities. This transition is a new stage in life for the entire family. In my opinion, the dementia patient needs to be in a safe environment while giving them as much independence as feasibly possible.
Localista: What should people look for when hiring a care manager?
Lauren Spiglanin: There are a lot of people out there in this field so it’s up to the families to be very particular and look for someone who’s experienced, is proactive, has great testimonials, and has a good reputation in the community. It’s also important for the families to have an advocate as well and someone who can ensure the caregivers are providing proper care. We have a one strike rule. If any caregivers go against any directives or act in a way that’s not at the standard of care required for the loved one, we’ll resolve the situation immediately. We have high standards and expectations. We’re very proactive and highly responsive to all calls and communication 24/7. This is vital to the family in order to take away that stress.
Localista: How is Family Connect Care different from other care managers?
Lauren Spiglanin: We never compromise the dignity and self-respect of any of our patients. Our primary focus is to help a loved one age in place. We provide home checks to be sure the environment is safe. If more specialized care is needed or the home is not safe, then we will work on the next step to transition the patient into a memory care facility. We’re able to tailor our services to the family’s needs to provide peace of mind. We haven’t turned anybody away who needs help. We provide exceptional care and find solutions to just about anything that comes up from in home care, transitions to memory facilities, advance care directives and complex cases. We have a registered nurse on our team and we stay on board as a full service care manager. It’s not just about placing the patient and leaving. I still check in with the families even after their loved one has passed. I’m there as a care manager for mom and dad but I’m there to care for the family as well.
Localista: What’s new on the horizon for dementia and Alzheimer’s care that looks really promising to you?
Lauren Spiglanin: More memory care facilities are opening up which is great because the current locations are out of space. We’re seeing facilities work with companies like us to provide more activities programs for families and their loved ones to help keep the patients mentally stimulated and engaged. [People with dementia] still have a purpose in life. They have a lot to contribute and want to be useful.
About Lauren Spiglanin
Lauren Spiglanin is CEO of Family Connect Care and a leading authority in care management, specializing in helping people challenged by Alzheimer’s and dementia. She has been providing caregivers with peace of mind and advocacy for their loved ones since 2009. She is a Certified Gerontologist (UC Davis) and member of the National Association of Professional Geriatric Care Managers. Questions for Lauren? Ask here.