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.
Why It Is Beneficial To Start A Memory Care Search Early
From finding and touring memory care residences to finalizing legal documents to managing the memory care move, it will take at least 2 months to sort out the logistics of moving your loved one into memory care. For most families, 3-4 months is more normal. Financial hurdles, like getting covered by Medicaid, obtaining VA pension benefits or finding other payment support will take even longer. Even with professional financial planning assistance, it can take 6 months to arrange payment.
It is highly advantageous to be prepared when the times comes for memory care rather than to be scrambling. The onset of the need for memory care is just as like to be sudden as it is to be gradual. Patient behavior can change dramatically accelerating the need for memory care. However, unexpected changes with primary caregivers is just as likely to initiative the need. Since many caregivers are spouses and elderly themselves and they often push themselves beyond their own limits, caregiver injuries are more common than thought.
Another benefit of starting early is that it can let your loved one actually have a say in the decision. Making the decision in later stages of the disease, when the largest stakeholder cant communicate well because of symptoms, will only exacerbate emotions including the guilty feelings that often come with this change.
The sooner the preparation begins, the more likely it is to be a positive transition.
At What Point Do Dementia Patients Need 24 Hour Care
When living at home is no longer an option There may come a time when the person living with Alzheimers disease or dementia will need more care than can be provided at home. During the middle stages of Alzheimers, it becomes necessary to provide 24-hour supervision to keep the person with dementia safe.
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Resources For Dementia Caregivers
There are many resources available to caregivers of a person diagnosed with dementia. The Alzheimer’s Association will refer you to your local chapter for information, resources, and their hands-on caregiver training workshops.
“I’ve been to our local association’s caregiver workshops and to their monthly support groups, too. Every time, when I leave, I’ve learned something — techniques, strategies, things like that — and that I’m not alone in this,” says George Robby who is caring for his wife with Alzheimer’s in their Chagrin Falls, Ohio, home.
Other good sources of information, assistance, and support include your local Area Agency on Aging and, for those caring for veterans, the Veterans Administration’s Caregiver Support Program . Some senior care companies, including Silverado Senior Living and Home Instead Senior Care, offer programs and skill-building workshops at their facilities.
What Do Patients With Dementia Want To Know
My aim was to explore what the patients think is wrong with them, whether and what they have been told by their physicians about their condition, and what they would like to know about their illness. Thirty consecutive patients seen by me between October and December 1997 in the Old Age Psychiatry Service in Worcester participated in the study. Twenty were women. The patients ranged in age from 63 to 92 years . At the time of examination, 11 participants were inpatients, and 19 were outpatients. They had been in contact with the psychiatric service from 1 day to 17 years . All had a clinical diagnosis of dementia based on International Classification of Diseases, 10th Revision criteria, including Alzheimer disease , vascular dementia , and other or unspecified dementias . In addition, consensus guidelines were used to make a diagnosis of dementia with Lewy bodies in 1 of the otherwise unspecified dementias. Participants’ cognitive states were assessed using the Mini-Mental State Examination scores ranged from 7 to 29 . All participants gave verbal consent and answered a set of standard questions regarding the information they had received about their illness . The answers were recorded verbatim and will be the subject of further analysis.
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What Kind Of Changes And Conditions Should I Anticipate
Your familys physician can identify a number of issues that commonly crop up in dementia patients. For instance, in addition to confusion, you may notice frustration or agitation, particularly in the evening, as well as depression. On the physical side, your loved one may lose the ability to control bodily functions, and can be vulnerable to urinary tract infections. Those with severe Alzheimers disease may have trouble chewing or swallowing, while changes in depth perception can make patients more vulnerable to falls.
The Case Against Disclosure
The main arguments against disclosure centre on concern, mostly by relatives, that it would lead to depression, anxiety and possibly suicide .
Maguire et al suggest that this may be compounded by relatives reluctance to deal with the patients knowledge and grief. A clients daughter begged this papers author to stop the consultant disclosing a diagnosis of dementia to her mother, as the daughter would be the one dealing with the consequences and she felt she would not be able to cope. But Maguire et al found that people who were opposed to telling a family member wanted to be told if they had the condition. The reason they gave is that they had a right to know their diagnosis, and apparently saw no paradox in their views. Similarly, Holroyd et al found that more people would want to know the diagnosis if it were their own than felt a relative should be informed. Other arguments against disclosure included that it is of no benefit because there is no cure and that the person would forget anyway .
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Differences Between Memory Care And Nursing Homes & Assisted Living
Memory care is not the same as assisted living or a nursing home. The difference between memory care and assisted living is that memory care is specifically for people with Alzheimers disease, or related dementia, because they require a higher level of skilled care and supervision. Also called Special Care Units or Alzheimers Care Units, memory care communities usually offer shared and private spaces. Sometimes memory care exists as a wing within assisted living communities or nursing homes.
When compared to memory care, nursing homes are more expensive, more restrictive to the individual and provide a higher level of care. Nursing home candidates are typically accessed and found to require a nursing home level of care, which is a formal designation. Not all, not even close to all, persons with Alzheimers disease require nursing home level of care at the early or middles stages of the disease.
Memory care has more frequent safety checks than assisted living , and staff is specially trained to meet the needs and demands of residents who have difficulty with basic tasks because of dementia symptoms, from early to mid and late stages. Memory care units, therefore, offer most of the same services as assisted living, but with increased supervision and more routine, including structured activities to stimulate memory and hopefully slow the diseases progression. These activities might involve music or pet therapy, games, arts and crafts, etc.
Ethical Codes And Telling The Diagnosis
The psychiatrist should inform the patient of the nature of the condition, therapeutic procedures, including possible alternatives, and of the possible outcome. This information must be offered in a considerate way, and the patient must be given the opportunity to choose between appropriate and available methods.
But does this mean that psychiatrists have the duty to provide the information when there is no treatment? And how truthful should be the considerate way? Does it imply the whole truth? As much as the patient wants? As much as the patient’s physician believes is sufficient? The General Medical Council recommends that physicians, to establish and maintain trust in their relationships with patients, must give them the information they ask for or need about their condition, its treatment and prognosis… in a way they can understand. In practice, patients with dementia rarely ask for the information, and many physicians seem to think that because there is no cure to offer, such knowledge may be only detrimental and, therefore, not needed in therapeutic relationships. But can the relationships be successful without telling the truth?
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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.
Making A Dementia Care Plan: 10 Questions To Ask Your Doctor
This blog was published on November 23, 2015 and updated on January 15, 2020.
Dementia can be a terrifying diagnosis, especially when you do not know what to expect. Dementia, however, does not have to be a dark and mysterious force haunting every second of your loved ones life. Theres still plenty of joy to be found after a dementia diagnosis. Having the right medical information can help you or your loved one plan for the future, choose palliative care options, and pursue the right treatment.
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Emotional & Professional Care Cost
There is no standard emotional and professional care cost of taking care of dementia patients. As the families have more burden to take care of dementia patients, despite the presence of a part-time caregiver, it can lead to emotional stress. This is because most of the family members are either full-time employees or young adults. This can ultimately increase the cost as the familiar isnt receiving any dementia care services.
Safety Concerns May Be Signs Its Time For Memory Care
Bringing up safety concerns is an important way to make family members aware of dementia behaviors, says Branshaw. He may ask relatives or caregivers if:
- Their elderly loved one is leaving burners or appliances on after cooking
- A pet is being cared for properly
- There have been any emergency room visits
- Their aging parent has any bruises they cant explain or dont remember getting
- Wandering or getting lost has put their loved one in dangerous situations
Ask yourself if your senior family members safety needs are being met, or if they could use extra help to avoid dangerous situations.
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First Steps: Getting An Assessment
The first step towards choosing a care home is to get a new needs assessment from social services.
If the assessment suggests a care home would be the best option, the next step is a financial assessment .
The financial assessment will show if the council will pay towards the cost of a care home.
In most cases, the person with dementia will be expected to pay towards the cost.
Social services can also provide a list of care homes that should meet the needs identified during the assessment.
Paying For A Care Home
Who pays for care will depend on individual circumstances.
If you’re entitled to local council funding, the council will set a personal budget. This will set out the overall cost of a care home, what the council’s contribution will be, and what you’ll have to pay.
The council must show there’s at least 1 suitable care home available at your personal budget level.
If you choose a care home that’s more expensive than the council considers necessary, top-up fees may have to be paid.
If the person with dementia isn’t eligible for council funding, they’ll have to pay the full cost of the care home .
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Arguments For Limited Truth
Arguments for limited disclosure and deception quoted by Beauchamp and Childress include the following.
Therapeutic privilege
Honesty should not be confused with cruel openness, and if disclosure of the information seems to be harmful to the patient, the physician may be justified in withholding the information or even in using benevolent deception. The therapeutic privilege has a long tradition in medical practice, although more recently it has been criticized as an example of unacceptable paternalism. Misleading the patient contributes to the cult of expertise surrounding the medical profession and to a view of physicians not as providing a service, but as guardians of a special wisdom that they may determine when, and to whom, to divulge. However, paternalism frequently appears to be unavoidable in dementia care, and some professionals still defend telling lies to cognitively impaired patients. After all, anxiety, depression, and catastrophic and psychotic reactions do occur as the result of disclosure, and even suicides committed by patients unable to live with the burden have been reported.
Patients are not able to understand the information
Some patients do not want to know the truth about their condition
Supporting A Person With Dementia
The way a person with dementia feels and experiences life is down to more than just having the condition.
There are many other factors aside from the symptoms of dementia that play a huge role in shaping someone’s experience. These include the relationships the person has, their environment and the support they receive.
Personal relationships and someone’s social environment are central to life, regardless of age or mental ability. People can recognise this by being as supportive as possible. Carers, friends and family, can help a person with dementia to feel valued and included. Support should be sensitive to the person as an individual, and focus on promoting their wellbeing and meeting their needs.
When supporting a person with dementia, it can be helpful for carers to have an understanding of the impact the condition has on that person. This includes understanding how the person might think and feel, as these things will affect how they behave.
The person may be experiencing a world that is very different to that of the people around them. It will help if the carer offers support while trying to see things from the perspective of the person with dementia, as far as possible.
Each person is unique, with their own life history, personality, likes and dislikes. It is very important to focus on what the person still does have, not on what they may have lost. It is also important to focus on what the person feels rather than what they remember.
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Respite Care For Alzheimers Caregivers
Respite care is temporary assistance provided to the primary caregiver to allow them a break from caring for an individual with Alzheimers or dementia. It can be provided in the home, in an adult day care center, or sometimes in an assisted living residence or other residential setting. Respite care is sometimes provided free of charge or other times at a greatly reduced hourly rate. There are many different organizations and programs offering respite care services. It is worth noting that often times these are home care companies selling home care and marketing it as respite care even though they are charging the full hourly rate.
There are also federally funded programs that provide reduced rate or free respite care, such as the Lifespan Respite Care, the National Family Caregiver Support Program, as well as programs specific to individual states including Floridas Project R.E.L.I.E.F., New Jerseys Statewide Respite Care, and Connecticut Statewide Respite Care Program.
Your Loved One Has Unexplained Physical Changes
Weight changes, changes in posture, and mobility problems can all indicate that your loved one needs more assistance. It may be that your loved one is forgetting to eat, or that he or she forgot they already ate and are eating again. Slow movements may be an indicator of confusion or disorientation. Memory care communities will closely monitor your loved ones nutrition and wellness making sure that he or she is eating well.
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