Often, I hear from clients that they wish they knew me sooner in their journey with dementia. My answer is that they found me exactly when they were ready for me. The truth is that coaching is not the “end all, be all” and I want to share with you how I see the continuum of resources for individuals and families.
Informational helplines, websites and referral services are the first stop for many families. Most national organizations like the Alzheimer’s Association and the American Parkinson’s Disease Association have helplines that are staffed by trained volunteers and/or professionals. They provide good basic information to help give you solid information and referrals to local supports. Some information is also available through web-based resources, such as blogs, medical websites and companies that try to capture your web-info for future referrals like “A Place for Mom,” SeniorAdvisor.com and Caring.com. They offer you “free” information and referrals and make their money from the community when you move into a community/facility. They are very aggressive but do provide some good resources (warning: if you put your info into their website, you cannot access websites of service providers without going through their site again – tricky way they ensure they don’t lose you as a lead). Good local supports are also available through the United Way’s InfoLine at 211, Area Agencies on Aging programs, and Hartford Health Care’s Center for Healthy Aging. The latter can also provide a free in-home evaluation to make recommendations for services your family member may need.
Coaching is a different level of support. Some specific times you may benefit from coaching and consultation includes major transitions, when you’re trying to coordinate multiple family members or have complex family dynamics, when you have differences of opinion on the best decision for your loved one(s) goals, and when you have barriers that can be overcome with case-specific information needs. For instance, a husband who keeps trying to get his wife to take a shower may benefit from a brochure on communication (Helpline), or an assessment of the bathroom for safety or referral to a home care agency (local supports), and he may really benefit from specific examples of how to tailor his approach by using a coach. A coach works with families to identify where the person with dementia is functioning by “staging” their disease, and then offers stage-specific interventions and support to help the family meet their goals.
Coaching is different from counseling. Coaches have the answers you need and know where your knowledge deficits may result in problems. Counselors are helpful if you are having emotional barriers and need treatment for common challenges which result from the stresses of caregiving and family/life changes. I think of it like this: a counselor asks, “And how does that make you feel?” If that makes you feel like throttling the counselor, you may need a coach instead. If a coach suggests a change and it makes you have an anxiety attack, your needs may best be met by a counselor. Obviously the two work well together for caregivers too.
Care management is the next level of support. People sometimes think of care managers as expert referral sources in a “rent a daughter” model of care. A care manager helps families coordinate all aspects of support, coordinating the appointments, sometimes responding to meet the person in the emergency room, and corralling family members to help meet their clients’ goals. Case managers are angels on earth. It’s a hard and taxing job, and well used by families with complex care needs or for long-distance caregiving. Sometimes using a coach is a good transition until families are open to the thought of a care manager. Stressed caregivers often feel like they NEED to do it on their own, or should be able to, but the disease often takes two victims - caregiver and person diagnosed with dementia - and care managers can substantially reduce that risk.