More than 6 million Americans are currently living with dementia and this number is projected to increase to 13 million by the year 2050. The cost burden for care and demands on caregivers are considerable. Caregivers of persons with dementia (PWD) provide an estimated 18 billion hours of unpaid care, a contribution thought to be valued at more than 339 billion dollars. Caregivers of PWD rate the emotional stress of caregiving a PWD as high and have more financial and physical difficulties than caregivers of people without dementia (Alzheimer's Association, 2023).
At some point, PWD will develop behaviors that are difficult to manage. Home care clinicians can provide valuable assistance by explaining and managing these behaviors, thus promoting safety and an improved quality of life for patients and caregivers. Typical personality changes and/or behaviors that can be observed in PWD include depression, apathy, anxiety, irritability, hiding things, hoarding, wandering, hypersexuality, pacing, hallucinations (either auditory and/or visual), delusions, paranoia, difficulty communicating, emotional lability, aggression such as hitting at others, decreased appetite, sleep disturbance, and a lack of attention to hygiene and grooming (National Institute on Aging, 2017).
Often PWD are unable to identify the source or nature of their distress due to complex brain deterioration. Astute observations and awareness of the individual's behaviors and environment can provide valuable data on the distress they are experiencing as well as proper interventions to address the behavior. Clinicians should educate caregivers on how to evaluate PWD for physical issues such as thirst, hunger, pain, gastrointestinal distress (many medications prescribed for memory loss have gastrointestinal side effects), sleep deprivation, vision and hearing deficits that limit or distort their perception of the environment, temperature comfort, medication side effects and/or reactions, exacerbation of medical conditions, delirium, or infections. In addition to physical issues, the patient may be reacting to noises, responding to an overstimulating environment, a change in caregiving personnel, or a change in their usual routine. It should be noted that PWD often have difficulty adjusting to new environments such as a move to a new home or facility.
Everyday is a new day for PWD, and the only predictable outcome is disease progression. How the individual progresses and over what time frame is unknown for most patients. Caregivers cannot stop the disease but can be taught strategies to reduce the caregiver burden and provide a greater quality of life for the patient. Strategies from the National Institute on Aging (2017) include:
* keep tasks and activities simple,
* give directions one step at a time,
* provide frequent reassurance that the PWD is safe, and you are there to help,
* provide clues about a suspected feeling (e.g., "you seem upset"),
* never argue or try to reason with a PWD, rather redirect them from an undesirable activity,
* stay calm and try not to show frustration-if needed, leave the room for a few minutes if it is safe to do so,
* use humor if appropriate,
* plan extra time for grooming and allow the PWD to complete as much activity as possible,
* use music, singing, dancing, or reading to provide distraction,
* help maintain a sense of purpose by asking PWD to help you (e.g., "here are the placemats - can you help me set the table?"),
* provide ample room for pacing with comfortable and supportive footwear,
* provide frequent snacks and fluids to maintain their body weight and hydration.
Additional tips from the Alzheimer's Association (2023) include:
* provide a toileting schedule,
* check for pain, skin irritation, thirst, hunger, constipation, and fatigue,
* maintain a calm predictable environment,
* provide a security object such as a doll, stuffed animal, or blanket,
* respond promptly to requests and never ignore the PWD,
* explore changes in behaviors to identify triggers.
Pharmacological interventions can be addressed with the attending provider for concerns related to anxiety, depression, aggressive behaviors, sleep or appetite disturbances. For patients struggling with psychotic symptoms (paranoia, hallucinations, and delusions), antipsychotic medications in low doses may help the PWD become more comfortable and manage undesirable behaviors. It is important to remember that older adults are at greater risk for drug side effects. This is even more concerning for PWD as they are often unable to identify or articulate undesirable side effects from newly introduced medications. A caregiver who is familiar with the person's usual behavior should observe for changes to identify issues with new medications.
Finally, home care clinicians cannot underestimate the value of providing support to caregivers, whether a family member or a paid individual. Listen attentively to their concerns, provide emotional support, and model proper approaches to patient situations. Encourage caregivers to take time for themselves away from the PWD. Provide them with social worker support, respite resources, and literature on dementia. Encourage them to join local or online support groups.
Dementia is difficult for all involved, and home care clinicians are an important member of the care team who can provide education and support to both patients and caregivers. Caregivers will need education on the disease as well as support measures. Working with the home healthcare clinician can provide patient-centered intervention measures to ensure the best quality of life possible.
NIH study reveals shared genetic markers underlying substance use disorders
By combing through genomic data of over 1 million people, scientists have identified genes commonly inherited across addiction disorders, regardless of the substance being used. This dataset - one of the largest of its kind - may help reveal new treatment targets across multiple substance use disorders, including for people diagnosed with more than one. The findings also reinforce the role of the dopamine system in addiction, by showing that the combination of genes underlying addiction disorders was also associated with regulation of dopamine signaling. There has been limited knowledge of the molecular genetic underpinnings of addiction until now. Further, most clinical trials and behavioral studies have focused on individual substances, rather than addiction more broadly. Published in Nature Mental Health, the study was led by researchers at the Washington University in St. Louis, along with more than 150 coauthors from around the world.
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