[1] Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
Family caregivers often give up time from work and forego pay in order to spend an average of 47 hours per week with an affected loved one, especially if they cannot be left alone.
[10] Furthermore, a substantial number of Hispanic/Latino caregivers revealed limited support, placing them at a higher risk of experiencing burnout and distress.
Caregiver burden refers to the physical, emotional, social, and financial challenges experienced by individuals who provide care for someone with Alzheimer's disease or other forms of dementia.
Witnessing the decline of a loved one's cognitive and functional abilities can be emotionally distressing and overwhelming.Providing care for someone with Alzheimer's can be physically demanding, especially as the disease progresses and the individual may require assistance with activities of daily living such as bathing, dressing, toileting, and feeding.
Caregivers may need to reduce their work hours or leave their jobs entirely to provide care, leading to loss of income and financial strain.
Respite care is designed to give rest or relief to caregivers and can take place in many different settings, depending on the needs of those involved.
[24] Nevertheless, it is common for low-income, marginalized patients to utilize community health centers not only to provide relief for their primary caregivers but also as an affordable alternative to privatized, expensive nursing homes to receive just as high-quality care.
Respite services provided to family members or friends caring for someone with dementia have positive effects such as stress reduction, increased time for relaxation, socialization, and focusing on personal tasks.
[26] In July 2023, the Centers for Medicare & Medicaid Services (CMS) announced increased integration of policy and legislative efforts such as the introduction of Guiding an Improved Dementia Experience (GUIDE) Model within Comprehensive Care for Alzheimer’s Act, an eight year program focused on decreasing burden on caregivers and improving dementia care.
[27] This model enhances dementia care in the US by helping patients and caregivers alike to better navigate the healthcare system and social support programs.
The main target population included non-IHSS direct care workers who support Medi-Cal recipients in the home and at community health centers.
[27] These videos help to educate caregivers on techniques to communicate with someone suffering from dementia, such as therapeutic lying, de-escalation and redirection, through scenario practice and role-play, increasing retention and confidence of healthcare workers.
[29] Nursing home managers do not understand how to take care of their dementia patients either, which could lead to a chaotic and hostile environment.
[39] Sometimes referred to therapeutic fabrication, joining their journey, or gentle deception, this is often a challenge, as caregivers historically don’t feel comfortable "lying" to their loved ones.
For example, if a person with advanced dementia has forgotten that a beloved family member died years ago, then it is unkind and unhelpful to tell them that the loved one is dead, especially if they are unlikely to remember this "new" information and may ask again in a few minutes.
[47] As of 2017[update], there is a lack of high-quality evidence to determine whether assistive technology effectively supports people with dementia to manage memory issues.
[48] Offering personally tailored activity sessions to people with dementia in long-term care homes may help manage challenging behavior.
At the same time, a program showed that simple measures, like talking to people about their interests, can improve the quality of life for care home residents living with dementia.
To prevent the elderly with dementia from receiving inadequate recognition of pain, nurses should use common sense to aid in assessments.
In general, however, the unfamiliar environment and routine practices of the acute care setting can be particularly challenging for people living with dementia.
The absence of family and familiar surroundings, on top of the physical issue leading to the admission, heightens anxieties, confusion, and distress.
Challenges in communication not only impact effective pain medication but also affect hydration, nutrition, and all aspects of physical and emotional care.
Increases in workforce capacity, physical environments that support familiarization, social interaction and activities, inclusive caregiver policies, and cultures of sharing knowledge have all shown promise in improving dementia care in the acute-care setting.
[62][66] Poorly managed incontinence also has a severe negative impact physically, psychologically, economically, and socially on people with dementia living at home and their informal caregivers.
[62][66] Guidelines suggest that treatment should always be preferred to containment, as pads and catheterization can be uncomfortable and negatively affect the person's dignity.
They identified priorities for action: the importance of early clinical assessment (rather than using pads); promoting continence through a balanced diet, exercise, and hand hygiene; encouraging and helping toilet use; and a sensitive management of incontinence to secure the person's dignity.
[71] It is important for caregivers to practice self-care to improve stress, happiness, and energy, reduce anxiety and burnout, and to build stronger interpersonal relationships.
[62][76] This can lead to worse clinical outcomes for people with dementia, a higher risk of infection, and the development of urinary and fecal incontinence.
[77] After a clinical assessment, a personalized continence plan should be created, which includes identifying reversible causes and contributing factors.