SELECTING THE RIGHT DOCTOR
Many primary care physicians (PCP) lack experience treating patients with dementia. There are advantages to continuing to use a PCP who has a long history of caring for your loved one.
But just as you might seek out a cardiologist for a heart condition or a dermatologist for a skin lesion, a patient with dementia needs to receive care from either a PCP with a great deal of experience treating dementia patients or a specialist (neurologist) who has specific training in treating neurodegenerative diseases. And the care of a neurologist will become even more important in the later stages of the disease.
Finding the “right” neurologist is a very personal search – one that, unfortunately, cannot be guided by a generic caregiver directory such as this one. The dementia caregiver should seek out recommendations from her PCP or other caregivers who are pleased with the neurologists who are treating their own loved ones.
Doctor, hospital and ER visits are especially difficult for dementia patients who are in mid- to late stages of the disease. They likely don’t understand why they are there, are confused by the unfamiliar surroundings, and can be easily agitated by a hands-on examination from someone they don’t know or trust. In some cases, the patient can become so agitated that they may require a sedative to relax them enough to be treated.
The following website provides some helpful hints on preparing for and managing these difficult interactions:
In-home care broadly describes two types of care with similar names but dissimilar levels of care: Home Care and Home Health Care.
Home Care describes a set of non-medical services such as companion care, respite care, assistance with the activities of daily living (see below) and light housekeeping – most often the need for someone to simply stay with the dementia patient while the family caregiver is away from the home.
Home Health Care (aka home health) describes a broad range of in-home medical services provided (usually) by licensed health care workers as an alternative to in-patient care at a hospital, skilled nursing facility, or senior living community. The skill level of the care workers can vary from that of a certified nursing aide to a registered nurse.
Home health may be prescribed by a physician, but a prescription is not necessary to receive this care.
Home health is most often provided by a state-licensed agency, but under certain circumstances, states will allow an unlicensed person to provide home health services (e.g., an individual hired and paid directly by the patient or patient’s guardian). Certainly, there are advantages to hiring a licensed provider whose care procedures are regulated and monitored by state oversight, but some of the best and most compassionate home health providers are simply individuals who have the necessary training, experience, and compassion to serve an elderly person in the home (e.g., retired nurses).
Services provided by a home care or home health provider include, but are not limited to:
- Assistance with the activities of daily living (ADL’s) – bathing, dressing, toileting, food preparation, feeding
- Medical care (administering meds, wound care, injections)
- Companion care (combatting isolation)
- Respite care (spelling the family caregiver for a few hours)
- Hospice & palliative care
- Supplement to facility staffing within a senior living community
North Texas home health companies generally charge $35-$40/hour and most require shifts of at least 4 hours – with many of them requiring 8-hour shifts. If asked, many home health aides will also perform light housekeeping duties and take loved ones out to lunch or to run errands.
The scope of duties to be performed by the home health team should be negotiated at the beginning of the relationship and documented in writing to ensure that all parties are on the same page as to the services to be provided.
Dementia patients carry an above-average risk for nutritional disorders as they (1) are prone to snacking and eating only what tastes good, and (2) in later stages, simply do not recognize that they are hungry. In fact, for many dementia patients, it is the refusal to eat that ultimately begins the spiral toward death as they do not sense hunger and simply fail to thrive on the few calories of food their caregivers can persuade them to eat each day. Similarly, they do not always recognize thirst and frequently become dehydrated.
Dementia patients also present their caregivers with a number of other mealtime challenges: difficulty in handling utensils, not recognizing what’s on their plate, choking, etc.
The following website presents some excellent information for caregivers whose loved ones are exhibiting a variety of mealtime challenges:
A wellness check is a non-emergency in-person visit (usually by the local police department or other public safety resource) in response to concern by family members, friends, or neighbors that an elderly person is not being responsive to attempts to make contact.
If you have loved ones who live alone without any close friends or family living nearby, please check in on them regularly. And if they don’t respond promptly to your call or text, consider calling your local police department’s non-emergency phone line and requesting a wellness check for them.
There exists plenty of research that validates the idea that healthy hearts and brains are less vulnerable to dementia. Caregivers are frequently so consumed by the tasks of caring for someone else that they neglect their own health.
Get plenty of cardiovascular exercise – even if it’s no more than a brisk walk for 20-30 minutes three days a week. And add strength-training exercises to build and strengthen muscles.
Not quite as obvious as the need for physical exercise is the need for mental exercise – a regimen of daily activities that make the brain work. Here the list of offerings is unbounded with plenty of subscription-based and free mobile apps and internet-based games that cause us to challenge ourselves to think, create or solve problems. The authors’ guidance here is simple:
- Find an app or game that is fun for you. You’ll be more likely to stick with it if it feels like a game instead of a chore.
- Find the right level of difficulty – for YOU. If it’s too easy, your brain is not being challenged. If it’s too difficult, you’ll grow frustrated and quit.
- Find time to engage the app several days per week.
- Find an app that can be paused – your caregiving duties may not give you uninterrupted time to play.
You don’t need the help of the authors to find the apps or games that are right for you. Simply type “brain exercise games” into your web browser and conduct your own search. But be careful about supplying personal information that could lead to unwanted subscriptions, a bevy of unwanted emails – or scams.
Brain HQ:
The authors do want to introduce one brain exercise app that is currently receiving a lot of media attention: Brain HQ (www.brainHQ.com). The product of an extensive study by neurologists, this subscription-based app ($15/month) closely mirrors the challenge of the old Concentration TV show, asking the player to remember where certain objects were displayed a few seconds earlier. And the app is unique in that over time, it observes how well (or not so well) the player is doing and adapts its level of difficulty to the player’s performance.
The authors have limited experience with Brain HQ and by no means endorse its use. We simply present it here as a good example of the type of brain exercises we should all be doing to keep our brains healthy.
Operated by The Centers for Medicare and Medicaid Services (a government agency), the Guiding an Improved Dementia Experience (GUIDE) Model is a voluntary, nationwide model testing the impact of providing comprehensive services and supports for people with dementia and their caregivers. The model began on July 1, 2024, and will run for 8 years.
- Problem: People with dementia often experience fragmented care that leads to poor health outcomes, and they typically need comprehensive caregiver support; family caregivers, who are often people with Medicare themselves, bear significant mental, physical, emotional, and financial burdens.
- Solution: The GUIDE Model advances coordinated dementia care to support both people with dementia and their caregivers by providing evidence-based services including care navigation, 24/7 access to a support line, caregiver training and education, respite services up to $2,500 annually, and connections to community resources.
- Outcomes: The GUIDE Model enables people with dementia to remain safely in their homes and communities longer by preventing or delaying nursing home placement, improving quality of life for both patients and caregivers, and reducing Medicare and Medicaid expenditures.
- Strategy: The GUIDE Model empowers caregivers with evidence-based tools and support while providing coordinated care management that addresses both patient and caregiver needs, ultimately preventing costlier interventions and improving health outcomes for America’s aging population.
Note: GUIDE does NOT provide services directly to patients or their caregivers. Family caregivers must access services and counseling from the healthcare providers who have completed this training.
The following link will connect the family caregiver to a current list of GUIDE-certified providers – from which the caregiver can search for a provider nearby.
https://www.cms.gov/priorities/innovation/files/guide-participant-list.xlsx
