Rely On A Plan Not A Promise
The most important reason to have a plan way before it is time to even think about placement is because you probably made a promise years ago that you would handle a loved ones care yourself. It is common for people to promise to take care of their parents, spouse, siblings, whomever and pledge to never place a loved one in a nursing home for any reason.
Well, sometimes never arrives before we know it. I am telling you this as a man with dementia who knows his destiny. I am well aware of what is coming. In a year or two, I may not understand my situation, but right now I do. I do not want to put my wife or our daughter through the challenges of caring for me. I also dont want them to struggle with the difficult decision of whether to place me. They have the right to not be burdened by my disease.
Then theres the fact that, as a patient, I deserve and demand to be taken care of to the best of ones ability. A dementia patients daily care should not be substandard simply because of a promise their family member made some 20 or 30 years ago. We all have made promises we havent kept for one reason or another. This thing about, I promised my Mom I would never put her in a facility, is noble, but thats about it.
There is research involved, an assessment of your loved one must be conducted, and there needs to be a financial plan in place to cover the costs of professional care. When you take your time to prepare, there is less drama and fewer surprises.
Treat Your Caregiving As A Condition
Many caregivers constantly debate and struggle with their loved ones aboutpotentially dangerous tasks, such as cooking and driving. Those powerstruggles compound the physical and mental burden of the care itself.Thats why, as the illness progresses, in addition to managing thecomplications of the illness, we focus care on the caregiver, saysJohnston. Try to find ways to arrange frequent breaks, respite care andstress-relief measures as your mandatory medicine.
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When Should Someone With Dementia Move To Assisted Living
According to the Alzheimers Association, around 16 million Americans dedicate their time to taking care of a family member with dementia. While it is good for these people to devote themselves to their loved ones, it can be a burden to ensure home health care without falling sick or affecting their careers.
More importantly, time will come when the increasing needs of dementia patients exceed our capabilities. Even relying on caregivers is just a temporary solution. It is the time when we have to carefully consider moving a loved one into an assisted living facility.
But when should people with dementia move to assisted living facilities?
Every patient is different, so there is no specific guideline to follow when deciding if its time to move them to a facility. However, according to experts, the following are the most common signs that call for a shift from home care to assisted living.
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The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
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
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Planning For The Move
Once a place becomes available in a residential facility a decision may need to be made very quickly, so it is helpful to plan the move in advance. Many people with dementia can be disturbed by change. Explain simply and gently where and why they are moving. Emphasise the positive aspects such as new friends and enjoyable activities. If at all possible, introduce the person with dementia to the new facility gradually so that the place becomes a little more familiar and a little less confusing and frightening. Sometimes of course this is just not possible, especially if the move has to be made quickly.
Ensuring that their new room has as many familiar items as possible may help with the move. Family photos and familiar prints or paintings on the wall and familiar bed coverings can make the new room look a little like their own bedroom at home.
Label all personal items with large, easy to read identification. During this initial moving stage it will take time for both the person with dementia and their family and carers to adjust to the new situation. Expect a period of adjustment. People do settle. Many actually do better in a structured environment they feel more secure and get more stimulation.
There is no right number of times to visit or length of time to stay. Some people want to visit frequently during this time. Others will want to rest and recover from the strain of caregiving. The important thing is to make each visit as rewarding as possible.
Emergency Admissions To Hospital
Our dementia guideline says that before admitting a person living with dementia to hospital, the value of keeping them in a familiar environment as well as any advance care and support plans should be taken into account. For people living with severe dementia we recommend that an assessment should be carried out that balances the persons current medical needs with the additional harms they may face in hospital, such as a longer length of stay and increased mortality.
These recommendations were made to reduce the likelihood that a person with dementia is admitted to hospital. However, data reported by Public Health England shows that the number of emergency admissions to hospital for people with dementia for admissions which are short stay have increased, from 95,000 in 2014/15 to 115,000 in 2017/18.
Variation in admission rates from the national figure are seen at CCG level. In areas where the admissions are above or below the national rate, further investigation may be necessary to understand the factors contributing to these rates. This may include the provision of primary or community care services and how dementia care is managed and reviewed.
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The Seven Stages Of Dementia
One of the most difficult things to hear about dementia is that, in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down. The cognitive decline that accompanies dementia conditions does not happen all at once – the progression of dementia can be divided into seven distinct, identifiable stages.
Learning about the stages of dementia can help with identifying signs and symptoms early on, as well as assisting sufferers and caretakers in knowing what to expect in further stages. The earlier dementia is diagnosed, the sooner treatment can start.
Helping A Loved One Adjust To Dementia Care
Because everyones transition into dementia care is different, theres no surefire list of solutions to address every need and situation that will arise. There are, however, a number of general guidelines that have been found to help ease the transition for the vast majority of people.
Telling a loved one about the move to dementia care in advance can create anticipation anxiety and negative thoughts that can culminate into negative actions. Instead, wait until just before the move, or even the day of the move, to begin the transition on an even keel. Then, you might benefit from fiblets and not being forthcoming with news that this will be your loved ones new home, at least until he or she is more settled in.
After the move, these tips and techniques are widely used to help ease the transition:
Dementia care staff members have helped many, many residents successfully transition into dementia care. They can be an invaluable source of tips and techniques that you can use. Being in communication with them throughout the process is another key to success.
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Involve The Person But Think About The Carer
Planning the future move with the person themselves is vital.
There may be question marks about whether the person has the mental capacity to make a decision about the move, but their views should be included in the process of deciding.
Try to be positive about the move, and the benefits it may have for the person give them as much choice as possible, and let them feel that they have some control.
This can be a very difficult time for the carer and support from family, friends and professionals is very important. Many carers have devoted years to caring for the person and may need help in coping with losing them. They will need to find ways of continuing their caring role in partnership with the care home as well as developing other interests to occupy their time.
Hospital Visits During Covid
Due to COVID-19, hospitals continue to update appointment and visitor policies to comply with state department of health guidelines to protect the health and safety of patients, visitors and employees. For example, visitors may be required to wear a face mask or cloth face covering. Or, they may not be allowed to accompany patients in clinics, hospital departments or the emergency room, with exceptions in certain cases. Before you plan a visit, call or check the hospitals website for information on their policies. Get the latest public health information on the coronavirus at coronavirus.gov.
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Taking Care Of Yourself
It is important to take care of yourself when the move takes place. Residential staff will be looking after the person with dementia consider who is going to help you at this time. Use family and friends for support during and immediately after the move. Know that you can call the National Dementia Helpline on 1800 100 500 if you need someone to talk to about how you are feeling.
Coping With Changes In Behavior And Personality
As well as changes in communication during the middle stages of dementia, troubling behavior and personality changes can also occur. These behaviors include aggressiveness, wandering, hallucinations, and eating or sleeping difficulties that can be distressing to witness and make your role as caregiver even more difficult.
Often, these behavioral issues are triggered or exacerbated by your loved ones inability to deal with stress, their frustrated attempts to communicate, or their environment. By making some simple changes, you can help ease your loved ones stress and improve their well-being, along with your own caregiving experience.
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Some Things You Can Try:
- Try to understand and acknowledge the feelings behind the wish to go home.
- Reassure the person that they will be safe. Touching and holding can be reassuring.
- Reminisce by looking at photographs or by talking about childhood and family.
- Try to redirect them with food or other activities, such as a walk.
- Dont disagree with the person or try to reason with them about wanting to go home.
What Can You Do When A Dementia Patient Refuses Care
One of the most challenging aspects of seeing a loved one facing the initial emergence of dementia is the unawareness and often, denial of the disease. The confusion causes upset for all parties, as well as resistance to medical help as the sufferer cannot see the problem or the need for assistance.
If your loved one is refusing the help of any severity, they can become distressed or aggressive if they feel like they are being forced into something. Whether they are refusing food, medication, healthcare assistance or a stay in a dementia care home, you must alter your approach to care to consider their feelings and demands.
Caring for someone with dementia will never be easy. But, here are a few ways in which you can help them understand that they need to accept dementia care without it resulting in a battle.
DEALING WITH DEMENTIA AND ACKNOWLEDGING THE NEED FOR HELP
Why are they refusing dementia help at home?
Your first helping hand in encouraging your relative to accept help is first to discover the reasons WHY they are refusing help.
Dementia patients are suffering an infliction on their memory, language and their ability to reason. Such complications mean their method of defence when they are unsure what is happening, is to say “NO” automatically! It’s important to remember that refusal isn’t always verbal. Your relative can deny help non-verbally, and you must look out for these warning signs, too.
Have patience when caring for someone with dementia at home
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When Should A Person Living With Dementia Go Into A Care Home
Making a judgment about when a person living with dementia is in need of residential care can be a difficult and emotional step for their loved ones, but understanding the factors which necessitate this move can enable more confident decision-making.
Many families are keen to keep their loved one at home in a familiar environment for as long as possible. However, as dementia progresses, it is likely that the person is going to need some kind of more specialist care.
It may become clear that someone living with dementia can no longer be safe and comfortable while living independently. For example, if they are struggling with everyday tasks such as cooking, cleaning or bathing and dressing themselves.
Since dementia most often effects older people, it may also be accompanied by other physical deteriorations, and incidents such as a hospital admission may create a compounded need for a higher level of care.
While it can be possible for loved ones to care for a person living with dementia, there are usually limits to how much family and friends are able to do, especially as the individuals symptoms worsen and their needs become more complex. When caring for someone at home starts to become unsustainable and too much for their loved ones to cope with, it is wise to begin considering professional care options such as a residential home.
Caring For A Dementia Patient At Home
During the early stages of dementia, you may find it easier and feel driven by a sense of loyalty to care for a loved one at home. You may only need to make some minor adjustments to accommodate the person until the disease progresses. If you’re considering taking care of someone with dementia at home, you may want to consider the following pros and cons:
Pros: Your loved one may prefer to remain within the comforts of their own home for as long as possible, and this option honors those preferences. The familiarity of the surroundings and ability to maintain as much independence as possible may also benefit them. You don’t have to assume full responsibility for the care of your loved one alone either, because in-home visits are often an option to address medical needs and provide support.
Cons: You may not be physically or mentally equipped to care for someone with increasing needs over the course of their disease. Caring for an elderly person with dementia can place significant pressure on your work life and mental health, among others. Your loved one may eventually need more support and supervision than you can provide.
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