Dealing with an Alzheimer’s diagnosis

Anytime a person receives a diagnosis and does not understand the basis or origin of that conclusion it can be very frustrating and upsetting. Feeling that a discussion took place without your knowledge; is certainly additional fuel, which seems to have ignited your anger. As a patient of a medical provider, you certainly have a variety of rights, including the right to privacy and the right to have a copy of your medical record. That being said, one of the symptoms related to Alzheimer’s disease is impaired memory, making it difficult to recall current events and facts as they may have occurred. Your husband probably had your best interest in mind, but the approach has upset you.

To deal with your anger and emotions it might be good to start with getting you the information you need to better understand this new diagnosis. Different medical professionals approach diagnosis differently, and a variety of tests can be done, from lab work to MRIs to computer skills tests and functionality assessments.

If you are looking for a more comprehensive approach to your diagnosis, you might consider a research-based program and treatment approach, like the one offered through the Alzheimer’s Disease Research Center at Duke University. Other types of clinicians or specialists in memory care can also be consulted. Examples of these would be Neurologists or Psychologists. Often there is a team approach to treating the physical, mental and behavioral aspects than can impact a person with this diagnosis.

Because we know that memory can be impaired and cognitive changes occur, start a notebook or journal that you can use to record information your medical team provides and request copies of reports from any testing. A journal can also be a great way to record how you are feeling each step of the way. Many people receive a diagnosis and they say “Now What”? emotions of fear, anger, sadness, and anxiety can all be experienced.

It is important that you have an outlet to discuss those, like a support group for people newly diagnosed, or a good friend or family member who is aware of your diagnosis and you trust to share feelings. There are also some very well written resource guides for someone newly diagnosed. One I currently use with a support group for individuals with a diagnosis of Alzheimer’s or other memory impairment is “Living Your Best with Early-Stage Alzheimer’s” by Lisa Snyder, MSW, LCSW. Members of the group have found the information to be helpful and appreciate the short chapters that can be easily re-read over time.

There is a wealth of information, but don’t let it overwhelm you; take it one step at a time. Make sure the information you read is from a reliable source, like Alzheimer’s North Carolina (www.alznc.org) or the Alzheimer’s Association (www.alz.org). The good news about identifying your diagnosis is that now you can start to build a plan for yourself and your family, learn about the disease, make informed decisions about the care you want to receive and get the much-needed support to help you through this journey.

Dementia and eating

Any type of memory impairment can create a unique challenge for many reasons. Much of our society is focused on food, both socially and as a necessity. People use food for comfort, for activity, to create routines, and to sustain a healthy lifestyle. According to “Dementia Care Central,” for the person with dementia, sitting down to eat a meal can turn into quite the frustrating ordeal, tacking on the task of meal planning and shopping can seem a daunting task. Eating is supposed to be enjoyable, but for people with dementia, it can be more of a stressor than anything else. By default, this stress often transcends to the spouse of a caregiver in the home. Here are a few tips for a better dining experience for people with dementia:

■Comfort is Key
Encourage meals together, because having someone there means someone cares, and if someone cares, then they are prone to eat more. If there is too much noise or activity in the dining area, it may be more difficult or to concentrate on eating. Try turning off any background noise that might create a distraction.

■Keep it Simple
Having too many food options can be frustrating and make the experience more stressful. Create a meal that is a few key foods and maybe plan a snack for before or after the meal.

■A Helping Hand
Sometimes people with dementia may need a little refresher course on how to use a knife or fork by demonstrating how to cut up meat or spread butter on bread. Encourage independence and always allow a person to maintain dignity and do as much as they can for themselves (gentle guidance).

■Encourage easier eating
Establish a routine for the week. You can try using a weekly meal planner so that once a week you create the plan and do not have to revisit the issues every day. If you have a plan in writing and a grocery list for the week, you can simply refer back to it. If you find a meal is successful, try incorporating it into the weekly routine.

■Know you’re Resources
Do some research in your area. Do you have grocery stores that deliver, or provide on-line shopping and drive through pick up? For example, Harris Teeter Express Lane shopping, I can order my groceries online and drive through to pick them up the next day. I might include a rotisserie chicken or pre-made item to keep things simple. Do you have meal delivery or pick-up services? For example, Goldie’s Gourmet in Seven Lakes has a menu for the month, you can pick up meals or opt to have them delivered. If you no longer drive, have you inquired about a meal on wheels or church volunteer programs in your area? We have a multitude of resources today for meals. You want to avoid fast-food or boxed/canned diet on a routine basis. Having a weekly plan will help avoid this pitfall. It is fine to have some go-to easy fixes for nights that just don’t seem to fall into place but certainly make every attempt to make meals an enjoyable and healthy experience that are a part of your weekly routine. As her mental capacity declines, you will likely face increasing challenges and want to do some additional reading on possible tips and suggestions for each stage of progression.
Helpful Resources: http://www.alz.org/living_with_alzheimers_eating.asp

Dealing with a necessary move

Most older adults are hesitant to move from their homes, but under some circumstances, it proves to be the best option to meet growing care needs. It is often a health issue or event such as a fall, which precipitates the need to move or modify the environment.

There are several factors you will want to consider. How is she managing meals, mail, shopping, medications, personal care, and transportation? What are her current medical, physical and mental health needs? Having some basic information on the things in her environment that are presenting a challenge currently, will help you determine what level or care or support she will need in her new environment to be successful. Having an environment that does not provide enough support can be as detrimental as having one that provides too much support (hindering independence), so finding the right fit is essential.

You will want to familiarize yourself with the continuum of care in your community. What types of housing are available? Freestanding apartments, shared group housing, adult communities, independent living communities, continuing care retirement communities, assisted living facilities, skilled nursing facilities and perhaps HUD or subsidized housing if finances are a concern. Also start to identify adult daycare options, care management providers, county agency for aging, home health and hospice care providers, and other related meal and transportation services. This will scratch the surface and as you move forward you will be able to identify other support services.

As you evaluate her anticipated needs and the appropriate setting for her, here are some key factors to consider:

• The capacity of the setting to meet both her immediate and future needs
• The ability of your aunt to adapt her lifestyle and habits to the new setting
• The extent to which the setting will promote maximum independence
• What type of support services are offered to help with the activities of daily living
• Is the setting affordable for her
• Is the area safe and conducive to safety awareness
• What is the proximity of the setting to family, medical providers and other activities she may choose to participate in, such as a church, shopping or bridge club

You want to choose a setting that will allow her to build connections with other people and continue in a lifestyle she is used to. Be prepared for an adjustment period and do some research on other aspects of the move you will need to consider, such as establishing new medical providers and notifying insurance carriers.