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After you get past the shock of diagnosis with dementia, what do you do next? Here are eight suggestions.

Adjusting to a diagnosis of dementia is a difficult process. Here are eight things for you and for those who care for you to keep in mind as the reality of the disease sets in.

There is no single right way or wrong way to feel about a diagnosis of dementia

However you feel is right for you. However your family and friends feel is right for them. Anger, sadness, shock, denial, and negotiating with fate are all common reactions to a diagnosis of a major neurocognitive disorder.

Some reactions, however, are more constructive than others. An initial reaction of shock and denial is not necessarily a completely bad thing. They give you time to process your new reality. However, it is necessary to get past denial of the disease to begin to take the steps needed for the best life for yourself and for your family.

The younger you are, the more likely you are to pursue a "problem-solving" approach to the challenges of dementia. The older you are, the more likely you are to pursue a "distance" approach to the challenges of dementia, ignoring as much as you can ignore. Either approach may be better for a given situation. There is no right or wrong way to approach dementia.

You didn't do anything to deserve dementia

There was no bad health habit and no mistake in lifestyle that gave you dementia. An inclination toward dementia was in your genes from before your birth, and your choices and experiences in life only caused those genes to express themselves sooner or later. If you believe in karma, then embrace the belief that it is your karma to show others how to live their best lives possible after a dementia diagnosis.

It's not unusual to feel relief after diagnosis

Some people who feel that their lives are totally out of control before a diagnosis can at least find a framework for going forward when their disease is named. At least you don't have to worry about what else it could be.

Talking with other people usually helps

You may not want to talk with anyone about how you feel about your dementia diagnosis. That's OK. It's also fine to speak with a social worker, or an attorney, or a trusted friend, or your family about how you feel about having dementia. You can find online forums in which people who have gone through the early stages of dementia share what they have learned. You may want to join an in-person support group.

Or you may want to talk with anyone who will listen about your dementia diagnosis. That's usually not OK. You may need to reveal your diagnosis to employers, employees, and business associates only after careful assessment of your financial future. If you anticipate being fired from your job, you will want to have spoken with an employment counselor who is not associated with your employer to make sure you know where you stand on sick leave, extended leaves of absence, disability benefits, future retirement benefits, and your rights under laws that protect the disabled to keep your job as long as you are able to perform it.

Be ready for changes in relationships

Dementia changes how you relate to people because people won't necessarily know how to relate to you. Be honest and straightforward about what you need from your friends, but allow them their own processing time to figure out how you wil continue to fit in their lives. Continue to be the best partner, parent. adult child, sibling, extended family member, and friend that you know how to be. And make sure that you continue social contacts as energetically as your illness permits.

As long as you can, make a point of taking care of the people who care for you. Caregivers for people who have dementia, one study found, have twice as many health diagnoses of their own as people who are not involved in caring for someone who has the disease.

Be ready for the fact that children won't always understand dementia

Children and grandchildren often aren't old enough to understand dementia. Your behavior and attitudes may be off-putting or scary or even creepy to them because they don't understand. Cultivate adult allies who help you deal with the children in your life. Make sure you continue to see younger children and grandchildren, but accept the fact that there are times that your adult children and other caregivers in your life may have to buffer you, and them, from the harder aspects of your disease. 

Cultivate an attitude of gratitude

Gratitude is associated with a number of positive emotions related to coping with dementia:

  • Humor.
  • Positive reframing of daily challenges.
  • Seeking emotional support from trusted friends and professionals.
  • Competence in offering and receiving care.
  • Emotional value found in religious coping strategies.

Always be ready to be your best self

People who have dementia sometimes retain insight to the very end of their lives. Self-understanding can be extremely difficult when you realize you said or did things that caused distress to yourself or your loved ones, or you made ruinous mistakes because you just weren't able to think things through. Some people in the mid-stages of dementia even become suicidal because they are so embarrassed by some of the things they did.

If you still have enough self-awareness to feel embarrassment, count yourself lucky. Make amends if you need to. Seek forgiveness if you need to. But realize that you continue to be a person of worth just as long as you are breathing. Providing for your care may be very hard for others. It can also be a trigger to personal growth in others that help them become more compassionate, more resourceful, more ingenious, better people who feel good about who they are and what they do.

  • Gilhooly KJ, Gilhooly ML, Sullivan MP, McIntyre A, Wilson L, Harding E, Woodbridge R, Crutch S. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr. 2016 May 18.16:106. doi: 10.1186/s12877-016-0280-8. Review. PMID: 27193287.
  • Lau BH, Cheng C. Gratitude and coping among familial caregivers of persons with dementia. Aging Ment Health. 2017 Apr.21(4):445-453. doi: 10.1080/13607863.2015.1114588. Epub 2015 Nov 27.PMID: 2661341.
  • Maki Y, Hattori H. Rehabilitative Support for Persons with Dementia and Their Families to Acquire Self-Management Attitude and Improve Social Cognition and Sense of Cognitive Empathy. Geriatrics (Basel). 2019 Feb 25.4(1). pii: E26. doi: 10.3390/geriatrics4010026.PMID: 31023994.
  • Photo courtesy of SteadyHealth

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