What To Know About Accessibility Of Dementia Care In Rural Vs. Urban Settings
When you think about your options for managing dementia, do you consider where you live? Dementia, a set of symptoms typically affecting memory and thinking, can impact people in both urban and rural areas, and where you’re located can play a role in your treatment options. In general, research shows that individuals who live in rural areas tend to have less access to dementia care than those in urban areas. Accessible care options like online therapy may be helpful for people with dementia in rural locations who may not have many local mental health professionals.
What is dementia?
Dementia is not its own illness. Rather, it can be seen as a cluster of symptoms that can be caused by several different illnesses affecting brain function. These dementia causes include the following:
- Alzheimer’s disease: Alzheimer’s tends to be the most common type of dementia. It is usually caused by a buildup of plaque in the brain.
- Lewy body dementia: Lewy body dementia can be caused by abnormal protein deposits called “Lewy bodies” in the brain.
- Frontotemporal dementia: Like Lewy body dementia, this form of dementia can also be caused by a buildup of protein, specifically in the brain’s frontal and temporal lobes.
- Vascular dementia: Vascular dementia can be caused by conditions affecting the brain’s blood supply, like strokes and blood clots.
Despite their differences, each of these types of dementia can affect a person’s memory and thinking abilities. Although these effects might start out mild, they often worsen as time passes. Some common examples include those listed below:
- Memory loss
- Trouble completing daily tasks
- Problems with communication
- Poor judgment and decision-making
- Changes in mood and personality
- Depression
- Anxiety
- Loss of interest in activities and relationships
- Trouble with movement and balance
The World Health Organization reports that dementia is the seventh leading cause of death worldwide, as well as one of the main causes of disability among older people.
Even though dementia usually affects older adults, people under age 65 can have it, too. This is known as “young-onset dementia” or “early-onset dementia.”
What does dementia care look like?
Before exploring how dementia care differs between rural and urban areas, it may help to understand what dementia treatment involves.
Although it currently has no cure, dementia can often be managed. People with dementia tend to need more care as their illness progresses, with later-stage patients often requiring ongoing help with daily tasks. Some may live on their own with in-home help, while others may need to move into an assisted living home. According to the CDC, people with dementia usually receive care from family members or friends.
Dementia management options
- Medication: Several medications may slow the progress of dementia and make its symptoms less severe. The right medication can depend on the person, their type of dementia, and how far along they are in the illness.
- Therapy: Treatments aimed at improving mental health and thinking abilities may also be helpful. Therapies like cognitive rehabilitation and cognitive stimulation therapy may sharpen memory, attention, and communication skills. They may also help people with memory loss improve their relationships and self-esteem.
- Daily assistance: Because dementia can involve challenges with movement, communication, and decision-making, having assistance with daily tasks may help patients maintain their health and independence.
- Lifestyle changes: People with dementia may be able to improve their brain health by making lifestyle changes. These can include focusing on nutritious eating habits, getting plenty of exercise, and limiting alcohol intake.
With proper treatment and support, it is often possible for people with dementia to reduce their symptoms while maintaining their mental health and quality of life. But what does this look like for rural and urban patients?
Accessibility of dementia care and Alzheimer’s disease care
It might not seem like there would be much of a difference between rural and urban residents when it comes to managing dementia. However, research has found that people living in rural communities may face bigger barriers to dementia diagnosis and care.
How accessibility of dementia care impacts diagnosis and treatment
There may be multiple reasons for this, but lower access to healthcare services might be one of the biggest. In a study from 2024, researchers looked at data on nearly 95,000 Washington state residents. They found that people in urban areas typically lived an average of nine miles from a neurologist. On the other hand, people in rural populations usually lived an average of 100 miles from the nearest neurologist. This lack of dementia specialists may make it harder to get the proper diagnosis and treatment.
In a different study from 2022, researchers analyzed data on over 70,000 patients with early-onset dementia. They found that those in rural areas generally had fewer neurological tests and visits to clinical psychologists. Instead, they normally relied on primary care providers (PCPs) for diagnosis and treatment.
However, according to a 2020 Alzheimer’s Association survey:
- 39% of PCPs reported that they were “never comfortable” or only “sometimes comfortable” diagnosing dementia.
- 22% of PCPs didn’t have specialized training in dementia care and diagnosis.
- 71% of PCPs in rural areas reported that there weren’t enough dementia specialists to meet the needs of patients in their area.
Challenges in accessing dementia care for rural patients
Rural dementia patients may also have a harder time getting access to other types of care. In the 2020 Medicare study mentioned above, researchers found that rural patients usually received less home healthcare than urban residents with Alzheimer’s disease.
They also spent less time in the community than their urban counterparts. Because research shows that being socially active may improve cognitive function, this potential isolation may also contribute to worse outcomes.
Getting help and assuring mental health care
Inequalities in rural healthcare access can pose unique challenges. Having ongoing mental health support may help people with dementia maintain their well-being and quality of life, but if you’re in a rural area, finding that support may be difficult. Online therapy may be a more accessible option. Platforms like BetterHelp empower you to work with a wide range of therapists without having to leave your home. You also have the option to change therapists as needed until you find the right fit.
The role of online therapy
Research shows that online therapy may relieve symptoms of depression, which can be common among people with dementia.
In a 2017 study, researchers looked at data from 373 studies of internet-based therapy. They found that online therapy could be effective at treating depression, anxiety, and multiple other mental health concerns.
Takeaway
Frequently Asked Questions (FAQs)
What are the mental health issues that people with dementia commonly face?
Research shows that the risk of psychiatric disorders is higher among people with dementia. One study found that this risk begins to increase from three years before diagnosis, peaks the week after, and then decreases rapidly. These results were similar for multiple types of dementia, including Alzheimer’s disease, vascular dementia, and mixed dementia.
People with dementia had significantly increased risks of anxiety, depression, substance use disorders, stress-related disorders, and psychotic disorders as early as seven years before diagnosis. Other associated risk factors for mental health issues among dementia patients in this study included being younger, having fewer physical comorbidities, having a higher Mini-Mental State Examination (MMSE) score, being better educated, and receiving a diagnosis in specialist care.
How do you assess mental health care for people with dementia?
Assessing mental health in older people with dementia can be challenging as many of the symptoms can overlap.
For example, depression is very common in people with Alzheimer’s during the early and middle stages, with an estimated 40% of people with Alzheimer’s experiencing significant depression. However, diagnosing depression in people with depression can be difficult as the two conditions share many symptoms, like social withdrawal, difficulty concentrating, loss of interest in hobbies, and impaired thinking.
The National Institute of Mental Health has diagnostic criteria for diagnosing depression in people with Alzheimer’s. They must have a depressed mood, decreased positive affect, and at least one more of the following symptoms during a period of two weeks, and the behaviors must be a change from previous functioning.
- Withdrawal or social isolation
- Changes in appetite
- Changes in sleep
- Changes in psychomotor activity
- Irritability
- Decreased energy or fatigue
- Feeling hopeless, worthless, or guilty
- Having recurrent thoughts of death, suicide, or a suicide plan or attempt
These symptoms must disrupt functioning or cause clinically significant distress, must not occur as a result of delirium, and must not be due to the effects of a substance. Symptoms must also not be better explained by another condition, including bereavement, schizophrenia, schizoaffective disorder, or Alzheimer’s psychosis.
What are the barriers to accessing dementia care?
Research has found that where someone lives can significantly affect their access to dementia care. Specifically, people in rural communities have less access to health care services than those who live in more urban areas. This occurs for a few reasons, many stemming from the geographic distribution of health care providers and the travel distance required to see a specialist. One 2024 study in the state of Washington found that people in urban areas lived an average of nine miles from a neurologist, while people in rural areas lived an average of 100 miles from one.
Because people in rural areas may not have convenient access to specialists, they may rely on their primary care physicians (PCPs) for diagnosis and treatment. However, research has found that PCPs may be uncomfortable diagnosing dementia, and they do not have special training in dementia care.
People with dementia living in rural areas may also have less access to other types of services, including home health services and respite services, community services, and opportunities to socialize with family members and others in the community. These barriers may contribute to poorer outcomes for rural dementia patients. Research has determined that rural patients with Alzheimer’s and related dementias have shorter survival times than their urban counterparts.
What type of person-centered care should be given to someone with Alzheimer's disease?
According to the Alzheimer’s Society, person-centered care “involves tailoring a person's care to their interests, abilities, history, and personality.” This type of care can have many benefits, including helping the person take part in things they enjoy, which can help avoid some behavioral symptoms of dementia.
In patient-centered care, caregivers should treat the person respectfully and take the time to get to know their lifestyle, history, and culture. Caregivers should attempt to see things from the point of view of the person with dementia. Consider their likes and dislikes, and help them take part in the hobbies and activities they enjoy. When possible, families and the person with dementia should be involved in developing the plan of care.
How can you access additional support when supporting individuals with dementia?
There are a variety of ways to improve access to support and other dementia services for family caregivers and other unpaid caregivers caring for someone with this disease, including:
- Adult day care services and respite care
- Long-term care facilities or nursing homes
- Residential care
- Support groups
- In-home care
There are also a number of healthcare professionals involved with clinical teams who can offer care coordination, assistance, or support, such as geriatric care managers and social workers.
The Alzheimer’s Association has a broad list of tools and resources you can access online, including a 24/7 helpline, local resources, support programs, and education programs. It also sponsors early-stage social engagement programs and offers a number of online tools.
Alzheimers.gov also has links to several resources that can help you find a local or statewide program, federally funded resources, and non-profit organizations on a national level.
How can you increase a carer's understanding of dementia?
A systematic review of studies researching how to support informal caregivers of people with dementia has determined there are several effective ways to support these caregivers and increase their understanding of dementia. Some of these may include the following:
- Education about dementia, its symptoms, building personalize strategies for care, and what to expect as the symptoms progress to severe dementia
- Training programs for how to provide care and respond to changing behavior, including altering communication strategies
- Guidance about how to plan meaningful and enjoyable activities for the person they care for
- Advice on caring for their own emotional and mental health
In addition, this research found that these methods were more effective when they are easy to access and tailored to the needs and preferences of what the carer is hoping to achieve.
How can you improve the quality of care for dementia patients?
Improving the quality of care for dementia patients can include a range of interventions in multiple areas, including the care delivery and social care system.
The Alzheimer’s Association has made recommendations for improving the quality of care based on a review of best practices, expert opinion, and research. Some of those recommendations are as follows:
- Educate health care professionals to influence quality of care delivered in the healthcare system.
- Call upon public health officials to increase access to quality care at the state and local level, train health care professionals, and promote early detection.
- Educate policymakers and government officials about how access to formal care varies across ethnic groups and the research and standards that can improve quality of care for people with dementia.
On a more personal level, supporting caregivers can also improve the quality of care for people with dementia.
It can be difficult to understand the personal experiences of caregivers and the challenges they face. They can experience burn out, isolation from a lack of social interaction, and financial strain. People who provide this care in their own home may also need emotional support as the person they’re caring for progresses from the early stages of dementia, eventually needing more assistance with personal care and daily living.
As the condition progresses, it can be beneficial for caregivers to be aware of the medical and social care services that can provide support. For example, they can bring a qualified healthcare professional into the home to deliver services like medication management, toileting, feeding, and personal care.
What is the Accessible Information Standard for dementia patients?
The Accessible Information Standard is official guidance provided by the National Health Service in the UK that ensures all carers and service users have information that they can access and understand. It offers specific guidance for providers caring for people with dementia and their caregivers, stating that people with dementia will often require additional support to access information and communicate and that these needs are likely to change.
How would you access information, advice and support about dementia?
If you are caring for someone with dementia, talk to their care team about additional resources that may be available in your area. The Alzheimer’s Association and Alzheimers.gov also offer extensive lists of resources available.
Which is the most appropriate way to communicate with persons with dementia?
The most appropriate way to communicate with someone who has dementia can depend on the stage of dementia the person is experiencing. In the early stages, someone with dementia may still be able to engage in social activities, but they may find excessive stimulation overwhelming. In this stage, speak directly to the person, and don’t exclude them from conversations. Take the time to listen, and give them time to respond. You can also talk to them about what methods of communication they prefer.
As the condition progresses, it can be beneficial to engage with the person one-on-one in a quiet space with minimal distractions. Speak clearly and slowly, and maintain eye contact. Be patient, and give them time to respond. Ask yes or no questions, and give them time to respond before asking another.
Eventually, people with dementia may rely on non-verbal communication. At this stage, effective communication techniques may include touch or visual images. Be respectful and avoid talking to the person as if they aren’t there.
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