An estimated 55 million people around the world are living with dementia. While Alzheimer’s disease is the leading cause, there are other conditions that can lead to memory loss.
Receiving a diagnosis of dementia can be a frightening time for individuals and their families, but with the help of the WAM at Cleveland Clinic community and our experts, we’ve created a 10 Things Guide that we hope will help reduce anxiety and provide families and their loved ones with a roadmap to a safe, active and meaningful future.
You’ve Been Diagnosed
1.
Open up to your inner circle. Talk to trusted family members and friends about how soon to share your diagnosis. While this step may feel uncomfortable, it can be empowering and may open up connections and new sources of support. Family and peer support can be powerful, so consider sharing your journey.
2.
Find support. Life after your diagnosis still holds joy and opportunity. Joining a support group of others who are at a similar stage of the disease may show you new ways of coping. Your doctor’s office, local Alzheimer’s Association chapter or place of worship may be able to help you locate a group.
3.
Plan for financial and legal matters. Discuss these plans with family and professionals so you can help guide your future affairs. With the help of your care partners, prepare for long-term care needs, make financial and property arrangements, and name a trusted individual(s) to make decisions on your behalf.
4.
Create structure. Daily and weekly schedules will help you maintain healthy habits. Discuss with your care partners what gives you purpose—whether that’s reengaging or modifying old hobbies or even exploring new talents—and how to continue incorporating these activities into your life.
5.
Stay in touch with your doctors. It’s important to keep your medical team apprised of any new symptoms or changes in mood and functioning. There is no cure for the disease, but there are rehabilitation and mental health therapies available to improve functioning and quality of life for you and your family.
You Are the Caregiver
1.
Seek knowledge and support. This is a life-changing journey. Educate yourself on dementia and the journey ahead but pace your learning. It can be overwhelming to learn everything in the early phases of dementia. Talk to others who understand it, whether you meet through social networks online or caregiver support groups. Look to family, friends, and neighbors for help. Be specific about how they can support you—whether it is by providing transportation to appointments, engaging your loved ones socially, or being there to listen.
2.
Collect important documents. Assemble a binder with your loved one’s papers, and make sure they are up to date. Consider consulting an elder law attorney about long term care and estate planning and learning whether your loved one is eligible for benefits.
3.
Chart a roadmap. Together with your loved one, discuss future plans and specific signs that may necessitate need for a higher level of care for your loved one, whether by hiring help in-home or moving into a long-term memory care facility. Discuss how to ensure physical and financial safety, including when to limit or discontinue driving and managing household finances.
4.
Stay by their side. Make sure you or another trusted person accompanies your loved one to every doctor’s visit. Keep a record of those meetings along with any private discussions you may have with the doctor.
5.
Make and take time for yourself. It is impossible to be on call 24/7 for a person with the complex care needs that go along with a dementia diagnosis. You cannot care for them if you are not caring for yourself. Schedule time to tend to your own physical, mental, and spiritual needs. Reward yourself for the job you are doing.