Getting a formal diagnosis from a qualified psychiatrist or neuropsychologist is a step in the right direction. (For information on what dementia is and signs of the disease, click here.) As a geriatric psychiatrist, I make dementia diagnoses often. Many times families feel overwhelmed. So I've come up with 10 steps you should take after a dementia diagnosis to help you cope. A sense of humour can also help...
Ten Steps to take after a Dementia Diagnosis:
1. Ask your doctor for clear directives on the type of dementia diagnosed, what medication is used to treat it, the size of the doses and how to take the medication. Have it all written down in case you forget. It's important to ask your doctor these questions, or find a doctor who is qualified to answer them. Once you know what type of dementia your family is coping with, do some research on it.
2. Call a family meeting to inform close relatives and friends to help make everyone aware of the changes that your loved one is experiencing and will continue to experience. The most common form of dementia is Alzheimer's disease, so advise them to visit reputable websites such as www.alz.org or www.alzheimers.org.uk to learn more about the disease. If they offer, let them know that you will call on them for help as it is needed.
3. Research available kinds of care that are extremely useful like Nursing, Occupational Therapy, Music Therapy or Art Therapy that cater to Dementia patients. Age Caribbean offers Seminars to help you and your support system go about this step. Some forms of care may not be available in your country, but ask around for freelance professionals who may be able to help. Care can be expensive, but can make a big difference for dementia patients and you, the caregiver. Start discussing and preparing finances early on.
4. Investigate Support groups and take advantage of the free groups in your country. Click here for a list of the Alzheimer's Associations in the Caribbean. Joining a support group is a vital part of understanding the illness and how best to approach difficult situations. Do not be ashamed. You may be surprised at how many families are also coping with dementia.
5. Make a detailed care plan- In most families, one relative will be the main caregiver of the dementia patient- maybe a spouse, a child or a sibling. That person needs to get a break every now and then. Make a plan to hire help or get other relatives to help. Age Caribbean offers Seminars to help you and your support system go about this step.
6. Think about risks to the person's safety and put things in place to protect them. Think about the "4 F's" - fire, floods, falls and fraud and try to prevent them. For example, all bank accounts should be joint with a trusted person to avoid financial abuse. Invest in electrical appliances that turn off automatically. Install a handlebar in the bathroom. And don't forget to stop them from driving if they are too dangerous on the road!
7. Remember, DO NOT take anything personally when there are behavioural symptoms (e.g. aggression or violence), or personality change (e.g. being abrupt or rude). This is part of the illness and the person cannot help it. They are not just being 'miserable'. They are not well. Getting upset might just make the difficult behaviour worse. Be patient, calm and have a plan on how to cope.
8. Remember to put the patient first- we can forget that dementia patients are still people with thoughts and feelings. They are often totally dependent on us, so try to involve them as far as possible in their own care and help them maintain a sense of independence and normalcy. For example, let them choose their own clothes when dressing and try to give them food they enjoy. Age Caribbean offers Seminars to help you and your support system go about this step.
9. Encourage activities! Persons with dementia usually don't want to go out or be social, for many reasons. But there are other ways to keep them active and engaged. For example, ask for help with easy chores, even though they may not be able to do it very well. (See 100 Caribbean activities for persons with dementia). Ask them what they would like to do rather than telling them what to do. And remember to be patient!
10. Remember that you may start grieving for the person while they are still alive - they are no longer the person you have always known. This grief can be prolonged as the person may live for many years, but dementia only gets worse over time. You will have to come to terms with this change. Feelings of guilt, frustration, anger and confusion are normal for most grieving caregivers. Be sure to seek emotional support from close friends and family or from a professional to help you through this change.
Dr James Bratt, Lead Consultant at Age Caribbean and Geriatric Psychicatrist.