Navigate A New Life With Memory Impairment
Beyond helping families find these tools, social workers can help generally improve the quality of life for people with the disease, as well as their caregivers and loved ones.
Theres a life that can be fully lived with dementia if people are educated on how to do it. Social workers can help provide that, Epstein says.
Instead of families feeling like they are suffering through the disease, social workers can teach them how to implement new routines to improve the quality of life for everyone, whether that be attending an Alzheimers reading group or similar activity, decluttering your home to make it less overwhelming for the person with Alzheimers, or teaching caregivers how to deal with behaviors such as tantrums that your loved one might exhibit. Relatively simple strategies like these can help reduce tension for caregivers, which can result in reduced tension for their loved ones, too.
If we can reduce the stress on the family, we can certainly have a trickle down effect on the person with the disease because they arent sensing stress from the caregiver, Epstein says. Everybodys life is better.
While there are several helpful people caregivers can have on their Alzheimers care team, social workers can be a particularly significant resource to consult.
Impact On Families And Carers
In 2019, informal carers spent on average 5 hours per day providing care for people living with dementia. This can be overwhelming . Physical, emotional and financial pressures can cause great stress tofamilies and carers, and support is required from the health, social, financial and legal systems. Fifty percent of the global cost of dementia is attributed to informal care.
What Can Hospice Do For The Family Of A Patient With Dementia
Family members may have to make difficult healthcare and financial decisions, act as caregivers and provide emotional support to others. If the decision is made to stop medical support, families often experience strong emotions and feel overwhelmed.
Hospice offers comprehensive services for families of patients with dementia:
Caregiver education and training The family caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication becomes more difficult. We relieve families concerns by educating them on how best to care for their loved one.
Help with difficult decisions Hospice helps families make tough choices that impact the patients condition and quality of lifefor example, whether to give antibiotics for a recurring infection.
A VITAS nurse by phone 24/7 Even the most experienced caregivers will have questions and concerns. With Telecare®, they dont have to wonder, worry or wait for an answer. As the heartbeat of VITAS after hours, Telecare® provides trained hospice clinicians around the clock to answer questions or dispatch a member of the team to the bedside.
Emotional and spiritual assistance Hospice meets the needs of loved ones along with those of the patient.
Respite care Caring for a loved one with an end-stage illness can cause tremendous stress. Hospice offers up to five days of inpatient care for the patient in order to give the caregiver a break.
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Behavioral Issues Dominate Symptoms Of Dementia
Dementia, whether caused by Alzheimers or other age-related infirmities, is primarily expressed and diagnosed through abnormal behaviors. Dementia patients exhibit:
- Severe memory loss, particularly of short-term memory
- Difficulty communicating
- Depression and anxiety
- Inappropriate behavior and personality change
All of these issues can be successfully addressed through the use of applied behavior analysis techniques, either applied individually or as part of comprehensive systemic adjustments in the environment of care facilities.
Applied behavior analysts view these behaviors through the so-called ABCs of ABA:
- Antecedent The prompt, or initial situation, leading to a behavior.
- Behavior The action or behavior in response to the antecedent.
- Consequence The reinforcement mechanism associated with the behavior.
Although the short-term memory issues that usually accompany dementia can make consequences irrelevant to shaping future behaviors , a clear understanding of antecedents can still help caregivers adjust environmental factors to make life easier for dementia patients.
Solving these types of issues not only addresses the immediate problems facing dementia patients, but also serves to reduce the frustrations of their daily lives. This can solve secondary issues arising from dementia, including:
- Anxiety and agitation
- Verbal outbursts and aggression
Common ABA techniques used in dementia cases include:
Tips For Changes In Communication And Behavior For People With Dementia
Communication can be hard for people with Alzheimers and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:
- Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
- Allow the person to keep as much control in his or her life as possible.
- Respect the persons personal space.
- Build quiet times into the day, along with activities.
- Keep well-loved objects and photographs around the house to help the person feel more secure.
- Remind the person who you are if he or she doesnt remember, but try not to say, Dont you remember?
- Encourage a two-way conversation for as long as possible.
- Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.
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Some Dementias Are Curable And Some Patients Can Be Retrained Using Aba Techniques
Applied behavior analysis is not only for coping with the long, inevitable slide of incurable Alzheimers patients, however. There are a number of causes of dementia that are potentially reversible, including:
- Infections and immune disorders
- Brain tumors, strokes, and traumatic brain injuries
- Metabolic reactions and adverse reactions to medication
In these cases, ABAs not only work to help dementia patients cope with life impacted by memory loss and confusion, but actively help to retrain their brains to learn forgotten skills as the underlying causes of their dementia are corrected.
Although the patients may be older, the methods used for recovering dementia patients are often the same as those used in schoolchildren with Attention Deficit/Hyperactivity Disorder or Autism Spectrum Disorders .
- Discrete Trial Training Involves breaking down complex behaviors into a number of elements, which are separately and sequentially reinforced to build up into the desired behavior.
- Pivotal Response Treatment Rather than targeting specific behaviors, PRT involves a holistic examination of motivations and responsiveness in the patient.
From Nursing Doors To My Dad: When Dementia Became Personal
My personal experience in taking care of my dad with dementia was challenging. I was a caregiver who had to teach my mom how to interact and communicate with him. My mom still considered him to be her loving husband of 40 years, not acknowledging that his environment had changed. I also found myself talking to him as if he was the same dad Id known for 47 years. I know we all tend to forget things on a day-to-day basis, but what changed for my dad is when that forgetfulness was on a continuum with no remembrance of what was misplaced.
This behavior increased and thus warranted an evaluation for him to be diagnosed. Of course, the first reaction was denial from both of my parents. Then came reality as time progressed. I saw the distress behaviors when he was asked multiple questions at once and how my mom was doing everything for him, such as bathing, combing his hair, feeding him, etc. When I approached my mom, the conversation was about allowing him to do as much as he can for himself to avoid becoming so dependent.
Moving forward, we both saw the need for appropriate communication and how to modify those distress behaviors to produce positive health care outcomes. Although my dad is no longer with us, he has set the stage to teach, engage, and inspire health care providers to communicate and interact with people with dementia.
Nursing Programs at The Chicago School of Professional Psychology
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Activities And Games For Patients With Alzheimers Disease
As a caregiver of someone with Alzheimers, you can use games and activities to help stimulate their mind and senses.
Alzheimers disease is often known as the long goodbye not only because of its ability to affect someones cognitive and functional abilities, but also their emotions and moods, behaviour, and physical abilities, leaving behind a shell of a once-vital person that family and friends barely recognize. This can be tough to witness, but there are some ways you can continue to engage with the person in your care and spend quality time together.
Alzheimers disease affects everyone differently, so its often difficult to predict how it will progress, the symptoms , and the duration of each stage .
Since there is no cure, people with Alzheimers, and their caregivers, rely on treatment plans prescribed by the doctor, plus lifestyle changes to slow the progression of the disease.
Caring for someone with Alzheimers can be as rewarding as it can be emotionally and physically challenging.
Its difficult to watch someone you know struggling to perform everyday tasks and your natural reaction may be to just take over. However, research shows that people in the early stages of Alzheimers can still acquire and process new information, helping them to learn or improve their performance on cognitive tasks, so its important to let them try the task themselves, as long as its safe for them to do so.
DementiAbility method activities
What you need for this activity:
Living Well With Dementia
Psychologists work to assess, diagnose, treat and support individuals with dementia and lighten the burden on their families. Dementia is a syndrome caused by a variety of brain illnesses that affect memory, thinking, behavior and the ability to perform everyday activities.
Living well with dementia.
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Connect With A Dementia Care Coordinator
There are many elements to consider when beginning to care for a loved one with dementia at home. Legal, safety, health and interpersonal changes will need to be made. Dementia care coordinators can help with safety concerns, medical attention, medication management, nutrition support and more. They can be especially helpful when a loved one is dealing with other medical conditions for which they need treatment.
Some care coordinators will conduct an initial assessment to thoroughly check your home and living situation. They will create a list of needs and work with caregivers to address the improvements most impactful to the home environment. Together, dementia care coordinators and caregivers can fix safety concerns or remove possible triggers before they become a problem. The goal to this type of care is to keep people at home with the highest quality of life for the longest period of time, explains Havrilla.
As an added bonus, loved ones who have some assistance from care coordinators remain in the home longer. In a Johns Hopkins Maximizing Independence at Home trial, researchers found that patients who were in contact with a care coordinator at least once a month for 18 months were less likely to move to an institution or die than those in the control group.
To find dementia care coordination services in your area talk to your doctor or local organizations.
Blocking Out Negativity Related To Dementia
Try using positive words in reference to people with dementia or Alzhiemers. I recall giving a report to a nurse during her shift, and verbally stating words such as aggressive, wandering, and sundowner. However, now that I really think about the negative perception those words can give, my vocabulary has changed. When I think of the word aggressive, I think of someone wanting to physically harm another or be combative when his or her behavior may genuinely be involuntary. When I think of what a sundowner is, it is when the sun goes down and a patient becomes out of control.
As nurses, the first thing we may say is, OK, I will have to get the Xanax or Ativan ready for this shift. As nurses, we think its OK to have these antipsychotic medications on standby. Wrong!
Every behavior being expressed is their way of trying to communicate to you that they have a need. Antipsychotic medications should be the last resort, not the first choice.
Other negative words to avoid:
- Dementia sufferer
- Distractions when interacting
- Open-ended questions
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Adapt Activities Of Daily Living
Activities of daily living are basic personal care tasks that most people can do independently, but they become increasingly difficult for Alzheimers patients as their functional abilities decline. Understanding how memory loss impacts each ADL, timing them wisely, and adapting the steps and products involved will ensure they are completed in a way that preserves your loved ones dignity.
For many people with Alzheimers disease, bathing is a frightening and confusing experience. Elders may think they have showered recently, but in reality their last shower was days or even weeks ago. They can become confused by the process or become afraid of the water and the possibility of falling. Sensitivity to these issues and planning ahead can help make bath time easier on both of you.
Getting dressed may not seem very complicated, but Alzheimers patients and caregivers face some unique hurdles with this task. Both physical and cognitive decline affect an elders ability to recognize when it is time to change soiled clothes, choose appropriate items to wear, and take off/put on clothing and footwear. Minimizing these challenges can make a significant difference in a loved ones sense of control and independence.
Toileting and Incontinence Care
Learn Alzheimers Communication Tips
Communicating with a person who has Alzheimers disease can become incredibly challenging, but much of what a family caregiver does depends upon mutual understanding. Without clear communication, both caregivers and patients are left feeling frustrated and misunderstood. When combined with ample practice and patience, the following suggestions can improve interactions and facilitate daily care tasks.
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Speak slowly and clearly, but do not talk to the person with Alzheimers like a baby.
- Maintain respect dont speak about them as if they werent there.
- Minimize distractions and background noise, such as the television or radio, to help the person focus on and process what you are saying.
- Allow enough time for them to respond, and be careful not to interrupt.
- If you cant understand what they are trying to say, look for nonverbal clues and take their surrounding environment into consideration.
- Learn to interpret gestures, descriptions and substitutions.
- Offer choices instead of asking open-ended questions.
If Necessary Provide Adequate Preparation For The Final Stages Of Alzheimers Disease
Nursing care for dementia and Alzheimer’s patients becomes especially critical during the final stages when patients experience memory loss, depression, hallucinations, and psychosis. Kriebel-Gasparro emphasizes the importance of skilled nurses with extensive dementia and Alzheimer’s knowledge at these severe stages. Nurses not only provide treatment to patients but also help families prepare for end-of-life decisions.
While families may find it difficult to face these issues, nurses with gerontological training can help them make important end-of-life decisions. These nurses can facilitate conversations with family members about hiring elder-law attorneys and preparing necessary documents such as living wills, medical power of attorney, and end-of-life directives. They also provide emotional support to family members and suggestions for preparing emotionally for the final stages.
The Role Of Nurses In Providing Care To Patients With Dementia Or Alzheimers
The population pool of older people has steadily increased across the world. The elderly not only have longer life expectancy than ever before, but many live with chronic conditions that require healthcare services provided by geriatric specialists. Consequently, the demand for Alzheimer’s and dementia nursing care continues to grow. Nurses with gerontological specialties and training in these conditions play a crucial role in helping these patients maintain their quality of life and remain independent as long as possible.
Because there is currently no cure for dementia, patients rely on the care management provided by nurses in both clinical and home-based settings. Nurses provide direct care to patients, helping to relieve the burden placed on family members and other caregivers. An important component of Alzheimer’s and dementia nursing care involves education and communication about treatments, progression of symptoms, interventions, and coordination of services with other specialists.
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What Is Known About Caregiving For A Person With Alzheimers Disease Or Another Form Of Dementia
People with Alzheimers disease and related dementias are usually cared for by family members or friends. The majority of people with Alzheimers disease and related dementias are receiving care in their homes. Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimers disease and related dementias. In 2019, these caregivers will provide an estimated 18.5 billion hours of care. Approximately two-thirds of dementia caregivers are women, about one in three caregivers is age 65 or older, and approximately one-quarter of dementia caregivers are sandwich generation caregivers, meaning that they care not only for an aging parent, but also for children under age 18.
Caregivers of people with Alzheimers and related dementias provide care for a longer duration than caregivers of people with other types of conditions . Well over half of family caregivers of people with Alzheimers and related dementias provide care for four years or more. More than six in ten Alzheimers caregivers expect to continue having care responsibilities for the next 5 years compared with less than half of caregivers of people without dementia .
The demands of caregiving can limit a caregivers ability to take care of themselves. Family caregivers of people with Alzheimers and related dementias are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions.