At ICS we think a lot about the family members of the people we serve. We know that caring for a loved one with a disability or chronic health condition is no easy task. This is especially true for family members caring for loved ones with dementia, who may not be able to make decisions about or participate in aspects of their own care.
At the same time, we know that family caregivers are essential to our members’ well-being. If you listened to the recent Independence Radio interview with ICS Dementia Program Director Nettie Harper, you know that ICS considers building relationships with our members’ family caregivers an important part of providing the best care management.
Care managers who serve on the ICS dementia team work with family members and home care aides not only to make sure that our members with dementia receive services and supplies, but also to see that their days are optimized to keep them as engaged as possible. To do this, care managers must first develop a relationship with the family member who knows the person best, in order to get a complete picture of the person’s health, functional limitations, desires and needs.
The goal, as Nettie explained, is to develop for each ICS member with dementia a plan that provides an individualized rhythm for the member’s day, using what family members and aides know about their physical condition, but also about their emotions, strengths, abilities and passions.
So, ICS depends quite a bit on the family of our members with dementia – as informants, allies, and often as hands-on caregivers who supplement, oversee, or work side-by-side with home care aides to help the member. At the same time, we know that family members caring for people with dementia need many kinds of support that ICS is unable to provide.
CaringKind is there for you
Fortunately, in New York, there are groups offering excellent services for people caring for loved ones with Alzheimer’s and other dementias. One of those Nettie mentioned in her recent interview is CaringKind (formerly the New York City Chapter of the Alzheimer’s Association). Nettie calls CaringKind a “fabulous organization” that provides free training and support to family members and other caregivers in all five boroughs of New York City.
One CaringKind offering is a ten-hour Family Caregiver Workshop aimed at improving the quality of life for both the caregiver and their loved one with dementia. The workshop helps family members better understand dementia and the behaviors that accompany it. Participants learn new ways to communicate with their loved one. They also learn about common dangers and how to keep someone with dementia safe. The workshop has a strong focus on the needs of the caregiver, and provides a forum to share experiences, ask questions, and receive emotional support in a nonjudgmental environment.
CaringKind also offers nearly 100 free support groups at different times and locations – and in six different languages – all over New York City. Each group is led by a trained facilitator and gives participants a safe place to discuss the difficulties of caring for someone with Alzheimer’s disease or another form of dementia.
The support groups provide both practical and emotional support and have no time limit. Some people attend them for years as their loved one’s disease progresses and the challenges of caring for them evolves. There are also special groups for adult children, spouses, teens, and LGBT caregivers. You can find a group that is right for you online here, or by calling the CaringKind 24-hour Helpline at 646.744.2900.
One participant wrote, “This support group has saved my sanity, and allowed me to continue on as a caregiver. It is the key to my survival.”
Flexibility is built in
CaringKind understands that everyone’s life is different and the organization factors this into its services. The Family Caregiver Workshop, for example, is available at different times and on a variety of days to accommodate different schedules. More information about the Family Caregiver Workshop is available here. You can also speak with someone about the workshop or register by calling the CaringKind 24-hour Helpline at 646.744.2900.