The Challenges And Rewards Of Alzheimers Care
Caring for a person with Alzheimers disease or dementia can often seem to be a series of grief experiences as you watch your loved ones memories disappear and skills erode. The person with dementia will change and behave in different, sometimes disturbing or upsetting ways. For both caregivers and their patients, these changes can produce an emotional wallop of confusion, frustration, and sadness.
As the disease advances through the different stages, your loved ones needs increase, your caregiving and financial responsibilities become more challenging, and the fatigue, stress, and isolation can become overwhelming. At the same time, the ability of your loved one to show appreciation for all your hard work only diminishes. Caregiving can literally seem like a thankless task.
For many, though, a caregivers journey includes not only huge challenges, but also many rich, life-affirming rewards.
Caregiving is a pure expression of love. Caring for a person with Alzheimers or dementia connects you on a deeper level. If you were already close, it can bring you closer. If you werent close before, it can help you resolve differences, find forgiveness, and build new, warmer memories with your family member.
Caregiving can teach younger family members the importance of caring, compassion, and acceptance. Caregiving for someone with dementia is such a selfless act. Despite the stress, demands, and heartache, it can bring out the best in us to serve as role models for our children.
Medicares Benefits For Alzheimers & Dementia
There is not a simple answer to the question does Medicare pay for Alzheimers care?. Medicare, like most health insurance, does not differentiate Alzheimers and dementia care from other conditions such as heart disease. Instead, Medicare has certain policies with regards to when and how much it will pay for care. For example, Medicare will pay for 100% of the cost of nursing home care if it is medically necessary for 20 days and 80% of the cost for an extra 80 days. If an individual with Alzheimers requires care in a psychiatric hospital, Medicare increases the number of days they will provide assistance up to 190 days.
Medicare does not pay for personal care at home or in assisted living and its nursing home benefits are limited to 100 days.
Medicare does not pay for custodial or personal care that is provided in an assisted living residence. But it will pay for medical care provided in that location. The same applies for home care and adult day care. Personal care services, assistance with the activities of daily living and supervision that are typically necessary for Alzheimers patients are not covered. But medical care is covered. There is an exception to this for individuals receiving hospice care at home. Medicare will pay for homemaker services, which includes personal assistance for individuals determined to be in the final 6 months of their life.
Examples of potentially available benefits, which can be very instrumental for persons with Alzheimers, include:
Preserving Your Loved Ones Independence
Take steps to slow the progression of symptoms. While treatments are available for some symptoms, lifestyle changes can also be effective weapons in slowing down the diseases progression. Exercising, eating and sleeping well, managing stress, and staying mentally and socially active are among the steps that can improve brain health and slow the process of deterioration. Making healthy lifestyle changes alongside your loved one can also help protect your own health and counter the stress of caregiving.
Help with short-term memory loss. In the early stages, your loved one may need prompts or reminders to help them remember appointments, recall words or names, keep track of medications, or manage bills and money, for example. To help your loved one maintain their independence, instead of simply taking over every task yourself, try to work together as a partnership. Let your loved one indicate when they want help remembering a word, for example, or agree to check their calculations before paying bills. Encourage them to use a notebook or smartphone to create reminders to keep on hand.
Handling Sleep Problems And Sundowning
Sundowning is also known as late day confusion. Dementia symptoms may be more prevalent in the afternoon and evening. Due to their confusion and memory loss, they may also be unable to distinguish between daytime and night-time.
- Maintain a routine Keep their day-to-day activities structured, with regular meal, shower, and bedtime.
- Avoid napping in the eye Daytime naps will make it more difficult for your patient to sleep well at night. Instead, keep them engaged in other activities throughout the day.
- Encourage exercise Exercise promotes a healthier lifestyle and keeps the mind active before winding down at night. Consider going to your nearby exercise corner, brisk walking around your neighbourhood, simple stretches, and Qigong.
- Avoid caffeine and sugar Especially from the afternoon onwards.
Adjust the environment In the daytime, ensure that the place is well-lit to make it clearer to the patient that it is daytime. Before bedtime, turn off the lights, reduce ambient noise, and adjust the room to a comfortable temperature to prepare a conducive environment for sleep.
Medicines To Slow Their Cognitive Decline Or Manage Behavioural And Psychosocial Problems
Patients living with more advanced dementia are more likely to be using medicines to slow their cognitive decline or manage behavioural and psychosocial problems associated with cognitive decline and these medicines bring their own challenges to prescribing and pharmacy practice,.
The use of memory drugs such as donepezil, galantamine, rivastigmine and memantine have increased for a number of reasons including a growing level of awareness among the general public, partly a result of campaigns like the Department of Health campaign for earlier diagnosis of dementias, the off-licence use of these drugs and a recent significant financial investment in research into memory problems.
When a patient stops taking their memory drug, or misses a few doses because of inaccurate medicine reconciliation at transfer of care, their rate of cognitive decline increases. Once cognitive function is lost, it can never be regained and many hospitals treat memory drugs as critical medicines that must not be missed.
Box 2: Anticholinergic burden of medicines
Long term use of medicines with anticholinergic side effects by older people can impair cognition and increase falls risk, morbidity and, possibly, mortality. It can also cause constipation and urinary retention. Each person is susceptible to anticholinergic side effects to a different degree but people living with mild dementias appear to be more susceptible to the cognitive side effects.
ACB score 1 :
- beta-adrenoceptor blockers
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Warning Signs Home Care For Dementia Patients Isnt Working
Theres currently no cure for dementia. Some older adults age at home successfully for years or even decades with moderate dementia, relying on family caregivers for support. But its important to keep in mind that dementia is unpredictable, and care needs could change suddenly.
Also, dont forget that caregiver needs and abilities may change as well. Poor caregiver health is one of the most common reasons older adults with dementia move to memory care.
If dementia progresses to the point where any of the three must-haves safety precautions, health care, and stimulation cant be met, or the caregivers emotional or physical health is at risk, memory care may be needed. Exploring options early can help prevent stress and worry when the time comes for a change.
Contact our Senior Living Advisors if caring for a parent with dementia at home has become overwhelming, or if you believe your loved one isnt receiving the necessary resources to slow cognitive decline. Our senior living experts can provide more information about respite options, professional Alzheimers home care, or memory care in your area.
What Should You Avoid Saying To Someone Who Has Dementia
I ll go over five of the most fundamental ones here: Don t tell them they re incorrect about something, don t dispute with them, don t question if they remember something, don t remind them that their spouse, parent, or other loved one is deceased, and dont bring up issues that might distress them.
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How You Can Help
Let the person help with everyday tasks, such as:
These can lead to increased confusion and make the symptoms of dementia worse.
Common food-related problems include:
- forgetting what food and drink they like
- refusing or spitting out food
- asking for strange food combinations
These behaviours can be due to a range of reasons, such as confusion, pain in the mouth caused by sore gums or ill-fitting dentures, or swallowing problems .
Tips For Home Safety For People With Dementia
As a caregiver or family member to a person with Alzheimers or related dementias, you can take steps to make the home a safer place. Removing hazards and adding safety features around the home can help give the person more freedom to move around independently and safely. Try these tips:
- If you have stairs, make sure there is at least one handrail. Put carpet or safety grip strips on stairs, or mark the edges of steps with brightly colored tape so they are more visible.
- Insert safety plugs into unused electrical outlets and consider safety latches on cabinet doors.
- Clear away unused items and remove small rugs, electrical cords, and other items the person may trip over.
- Make sure all rooms and outdoor areas the person visits have good lighting.
- Remove curtains and rugs with busy patterns that may confuse the person.
- Remove or lock up cleaning and household products, such as paint thinner and matches.
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How Can You Determine If Someone Has Dementia And Is Dying
According to experts, the following are indicators of Alzheimers disease in its terminal stages:
Keep Up Social Connections Just 10 Minutes A Day Can Help
Things like music therapy or just playing some pleasing, quiet music, a massage, or exercise can help the mood and behavior of some people with dementia. Unfortunately, the research on these alternative therapies is not far-reaching enough to suggest them as treatment or therapy for dementia patients, but you could see if these work for your loved one.11
Encourage people to visit and meet with the patient. Sometimes the embarrassment or fear of others seeing the changed behavior, personality, and memory of the individual can be discouraging when it comes to having visitors. Overcome this, because these relationships are crucial. Keep up their routines and hobbies and interests as much as possible. If they were a weekly church-goer, go to church with them. If they liked walking in the park every evening, they should continue to do so, but with someone to help them if they forget their way home. Keep up as much of a semblance of normalcy as you can. As one study found, the impact this can have is huge! Researchers found that dementia patients who indulged in as little as 60 minutes of conversation every week which translates to an average of 8.5 minutes a day saw reduced agitation levels. This also cut down the perception of pain they were living with.12
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Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
Other Complications To Expect
Confusion due to memory loss can be challenging. Dont argue with them. Gently correct anything thats a danger or simply change the subject and distract them. If theres no harm, its OK to agree. Giggle silently at the funny response, but dont judge.
Routine hygiene and skin care to prevent breakdown are essential. Dementia patients especially those with Alzheimers are prone to skin breakdown and can become septic quickly. Mobility is important even just a change from the bed to a wheelchair and sitting in another room stimulates the brain. A reclining wheelchair can be used for those inclined to try to escape. Participating in activities, adult day care programs, listening to music especially familiar hymns or music from their generation can be stimulating and comforting. Being read to can also be calming and comforting even though they may not be able to respond, understand, or remember the plot 10 seconds later.
Pet therapy can also be comforting and distracting for even some of the most combative patients, although safety for everyone takes precedence. Petting an animal or watching play can be heartwarming especially to animal lovers missing their pets.
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Understanding And Supporting A Person With Dementia
This page can help you understand what a person with dementia is going through in order to give them the help and support they need to live well.
Understanding and supporting someone with dementia
Living with dementia can have a big emotional, social, psychological and practical impact on a person. Many people with dementia describe these impacts as a series of losses and adjusting to them is challenging.
This page aims to give people – and carers in particular – a better understanding of what it is like to have dementia. It looks at ways to support someone to live well with the condition, based on that understanding. It also looks at how supporting someone with dementia can affect carers.
Press the orange play button to hear an audio version of this page:
How Do Patients With Lewy Body Dementia Deal With Hallucinations
Cholinesterase inhibitors, such as donepezil and rivastigmine, may be used by your doctor to treat the cognitive symptoms of Lewy body dementia. Visual hallucinations and other psychiatric disorders can also be treated with them. In some patients with LBD, levodopa may aid with mobility and rigidity.
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Use Repetition And Visual Cues
People can help the transmission of severe acute respiratory syndrome coronavirus 2 the coronavirus that causes COVID-19 by:
- avoiding close contact with people who have contracted the virus
- covering their mouth and nose when they cough or sneeze
- avoiding touching their eyes, nose, and mouth
- cleaning and disinfecting frequently used objects and surfaces
- washing the hands regularly with soap and water
- using an alcohol-based hand sanitizer
People with dementia may require additional support and visual cues to help them remember essential hygiene practices. Caregivers may wish to consider practicing thorough hand washing with the person.
They can also place a bottle of alcohol-based hand sanitizer in an easily accessible place, such as an end table next to the persons chair or on their nightstand.
Is It True That Lewy Body Dementia Is Worse At Night
For one instance, people with LBD have unanticipated cognitive changes no matter what time of day it is, but people with Alzheimers have more problems in the late afternoon and evening, a symptom known as sundowning. Visual hallucinations and mobility problems are more common in those with LBD, while
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Dont Remove Yourself Emotionally
Your loved one needs nurturing. You probably do too! Find ways to stay connected emotionally. Express how you are feeling, tell them a story, or even sing them a song if you feel up to it. Even if the receptive language has begun to recede, often the emotional tenor of a message can still get through. Express yourself to your loved one focusing on the emotional parts of the story rather than the details.
Strategies To Support Caregivers
While health systems will need to evolve and change to become family-centered and offer comprehensive dementia care, there are strategies clinicians can use now . A common complaint of caregivers is that no one asks how they are doing or what they do . Thus, caregivers could benefit from simply being asked about themselves and having a compassionate listener who provides reassurance, support, education, and referral. As part of routine care of a patient with dementia , clinicians can ask how the caregiver is managing. They can also initiate discussions with the caregiver concerning the scope and nature of his or her care responsibilities, sources of appropriate support and assistance, and self-management of stress and health. Based on these discussions, clinicians can emphasize the importance of the family caregivers managing his or her own health and stress and make recommendations to connect with local resources for respite, support, and other services. Thus, clinicians can help forge stronger alliances with patients caregivers by asking strategic questions and encouraging family caregivers to share their challenges .
Another approach found to be helpful for some caregivers is the use of a written or recorded oral diary . This strategy has been shown to help caregivers maintain their self-identity and enables them to pinpoint ethically complex challenges to inform discussion of possible solutions .
Table 2. Strategies for reaching out to family caregivers
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