What To Do After A Dementia Diagnosis

what to do after a dementia diagnosis

Receiving a dementia diagnosis can feel devastating, but odds are it also provides answers to concerns resulting from the disease’s first warning signs and symptoms. Once you’ve had time to come up for air and process your new future reality, long-term care planning is essential.

First and foremost, it’s important to honor and experience the range of emotions that are common after a diagnosis. These include anger, sadness, rage, deep grief, depression, relief (to finally know what’s wrong), hopelessness, and feelings of loss. It’s a good idea to seek support processing these feelings – for both the one who is diagnosed as well as their spouse, partner, children, etc. This may include spiritual counselors, professional therapists, a local dementia support group, or longtime friends or neighbors who have experience with the disease. 

This is the beginning of a journey for both the diagnosed and their loved ones, so it’s never too early to begin building a support network. Once you’ve had time to process, it’s critical that you begin making informed, long-term care plans. 

After The Diagnosis: Personalizing Long-Term Care Plans

Dementia is a progressive disease, but the speed at which the disease progresses is largely affected by the steps you take right now. Research shows that access to dementia medication as well as lifestyle changes can notably slow down the disease’s progression. Also, creating a tiered, long-term care plan means care is brought in as needed and in response to the client’s (and spouse/family) needs, which improves quality of life. 

Establish a relationship with a neurologist after a dementia diagnosis

Work with your primary care provider and insurance representatives to find a specialist. Booking an appointment with a neurologist specializing in dementia is a powerful first step. S/he’ll be your primary ally as you create a long-term care plan that keeps the disease’s progression in mind. The specialist is also on the frontline of treatments that reflect the latest research-based findings. 

Alz.org offers a list of questions to ask your doctor, and recording the session is a smart idea so you can play it back later when you are more relaxed. These include:

  • What test(s) or tools did you use to determine my diagnosis?
  • What are you measuring with the tests you performed?
  • How will the disease progress?
  • What can I expect in the future?
  • What treatment options are available?
  • Which symptoms are being targeted by each medication?
  • What clinical trials are available?
  • Where can I find published information about clinical treatment studies?
  • What care planning services do you provide?
  • What support services and resources are available to help me live well with the disease, for as long as possible?

Answers to these questions point you in the right direction and will help to guide your long-term care plans.

Start making positive lifestyle changes that support memory care

Perhaps it’s no surprise to learn that diet and lifestyle choices have a significant impact on how dementia progresses. The healthier you are and the more nourished the body is, the slower the disease progresses. 

Start researching things like “eating for dementia” or “foods that prevent memory loss.” Odds are you’ll come across recommendations for a MIND diet (Mediterranean-DASH-Intervention-for Neurodegenerative Delay). The Mediterranean diet is respected for its attention to nutrient-rich foods that minimize inflammation. The DASH diet is geared to prevent and manage heart disease. Together, they form a dietary guideline that promotes healthy brain function and eliminates ingredients/toxins known to exacerbate inflammation, which increases dementia symptoms and progression.

Regular exercise is also a key part of dementia care. In addition to boosting moods, getting seniors outside as often as possible, and supporting overall health/weight management, daily exercise also helps to tire the body and mind, making it easier to sleep at night.

Focus on healthy sleep habits

Adults with dementia and Alzheimer’s have a higher risk of insomnia and sleep disorders. Unfortunately, lack of sleep can make the symptoms of dementia even worse. Establishing routine sleep habits that support natural circadian rhythm reduces daytime/evening agitation (sundowner’s syndrome) and supports healthy brain hygiene.

In our post, ...Tips For a Good Night’s Rest, we cover the basics of establishing a regular bedtime routine, including:

  • Going to bed/waking at set times each day
  • Minimizing or eliminating stimulants like caffeine, alcohol, and nicotine (all of which are recommended to avoid with dementia anyway)
  • Getting adequate daylight during the day and dimming lights at least 30-minutes prior to bed
  • Staying off screens at least 30-60 minutes before bedtime
  • Establishing a relaxing wind-down time using a bath/shower, calming essential oils, relaxing music, reading or being read to, etc.

In the case of seniors with dementia, it’s a good idea to have locks installed above eye level and begin preparing the safety precautions necessary to prevent wandering.

Get estate plans, legal affairs, and medical directives in order

If you haven’t done so already, now is the time to get all of your financial and legal affairs in order, which includes establishing your POA(s), preferred healthcare agent (the person in charge of making healthcare decisions when a person is no longer able to do so for themselves), and advanced medical directives. 

Share these plans with your closest family members and friends so that everyone is on the same page and any potential issues or concerns are addressed ahead of time.

Begin planning for memory-specific homecare

A recent comprehensive study from Johns Hopkins Medicine showed that remaining at home…helps adults with dementia stay healthier and happier and live longer. However, that is only true when the individual has access to high-quality, memory-specific care. 

Spouse and family caregivers can only do so much. Eventually, there will come a time when in-home care services are necessary to facilitate daily tasks and general life happenings. The sooner you begin consulting with local licensed home care agencies, the sooner you can begin forming a gradual relationship that evolves in sync with your progressive needs. Enlisting support from in-home caregivers can begin with weekly visits to provide respite care for primary caregivers, run errands or prepare meals, to daily, overnight, and live-in care services as needed over time.

Schedule Home Care Consultations After A Dementia Diagnosis

Ultimately, long-term care planning makes it possible for those with dementia and their loved ones to live longer healthier, and more meaningful lives. 

Did you or a loved one recently receive a dementia diagnosis? Contact HomeAide Home Care. Our caregivers provide at-home memory care for Bay Area clients and their families.

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