Care Arrangement: Care at Home

 

Caring for someone with dementia can be overwhelming, so the road to care for a parent or a loved one with dementia will always be filled with fear and many challenges. Thus, it is essential to begin planning the caregiving process as soon as possible. However, very often people may not know where to start. Here, you will find some tips that can help you determine the best options for you and your loved one at every stage of the illness.

 During preparation for dementia care, the caregiver will experience a whole range of emotions and concerns. They will be worried about how the disease will change the person they care about and how that will affect their relationship. So, it is important to adjust to this new reality by being patient, monitoring stress levels and asking for help when you need it.


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MAKING A CARE PLAN: HOW TO ASSESS THE TYPE OF CARE YOUR LOVED ONE NEEDS

Once a person is diagnosed, their caregiver will have many questions that need to be answered as soon as possible in order to transition as smoothly as possible. Depending on the stage of the disease’s progress, the patient should be included in the decision-making process as much as possible. Below are some major questions that the patient and their caregiver must address:

1. Define who will make healthcare and/or financial decisions

If your loved one is still lucid enough, you should get their wishes down on paper in order to be preserved and respected by all members of the family. When your loved one is no longer able to make these decisions, you will need to decide who will have the power of attorney, both for finances and for health care and guardianship/conservatorship. It is advisable to decide on the primary caregiver at this point as well. These are some of the most important factors that has to be planned for as it will directly affect the patient’s care.

2. Understand and plan the finances for caregiving

In addition to appointing a guardian to handle the patient’s finances, plans also must be made for the financing of their care. This will be influenced by a number of factors including the type of care they opt for and how quickly the disease progresses. While the life expectancy of a dementia patient can vary from person to person, it can generally be estimated based on the type of dementia diagnosed.

Firstly, you will need to estimate what your loved one can afford with their savings and insurances. If they can’t afford the amount, you should consider what family members can pitch in. This should be further broken down into whether the contribution will be one-off or regular. In many countries, local Alzheimer’s or dementia associations often can provide information on programs and grants that can provide some assistance to fill in the gaps of your loved one’s finances for their care.

3. Define how care needs will be met

Firstly, you should start off by assessing how much supervision your loved one will need. Do they need to be watched after during the day time or at night as well? During the early stages, the patient may not need to be watched over as much, but as the dementia progresses, the caregiver will need to increase the amount of supervision. It is not realistic to assume that only one person will be taking up all the caregiving duties. While there certainly needs to be a primary caregiver who can take the responsibility for major decisions relating to the patient, other family members and even close friends should pitch in.

These ‘helping hands’ should be planned in advance as well. When should they help? How long would they be needed? What will they be expected to do? Do you have to implement a ‘shift’ system between caregivers? Use a structured scheduling system to streamline this process. Eventually when the disease is in the later stages, the patient will need round-the-clock care, so it is important to communicate will all family members to make sure that your loved one’s needs are met, and that the primary caregiver has the support required to meet those needs.

4. Define the place where the dementia patient will live

The place where your loved one will live needs to be suitable and safe for their condition. You must factor in the changes that they will experience over the course of the disease. While many dementia patients are still able to lead independent lives during the initial stages, it is not advisable to have them living alone. In case your loved one does live alone or far from family, you should consider relocating them or looking for facilities that offer better support.

5. Develop day-to-day routines for dementia care

Even during the early stages of dementia, it is important to start having routines for the patient as it helps caregiving run smoothly and provides a sense of consistency to the patient. As the disease progresses to the later stages, the routine becomes more and more essential to the patient’s life. You can start off by asking your medical team for information regarding establishing routines.

Start off by breaking down the calendar. Every day and every hour of the day should be planned ahead of time for the patient. Things such as breaks for the caregiver or holidays should be planned with the patient’s best interest in mind. On a day-to-day level, try to keep consistent times for activities such as waking up, mealtimes, bathing, dressing, receiving visitors, and bedtime. Keeping these things at the same time and place can help your loved one.

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FAMILY AS FULL TIME PRIMARY CAREGIVERS

What is it?

In this type of care, typically the primary caregivers are sons, daughters, wives, husbands, grandchildren, nieces or nephews that provide unpaid assistance to their family member suffering from dementia. The primary caregiver manages a wide range of responsibilities including:

  • Buying groceries, cooking, cleaning the house or doing laundry for the patient
  • Assisting their loved one with personal tasks such as getting dressed, bathing, and eating
  • Helping with transferring the person with dementia in and out of bed, helping with physical therapy, injections, feeding tubes or other medications and medical procedures
  • Making medical appointments and driving to the doctor and pharmacy
  • Consulting with the doctors, care managers, and others to understand what needs to be done
  • Being the designated "on-call" family member for issues relating to the patient’s health

For some, caregiving occurs gradually over time. For others, it can happen overnight. Regardless of circumstance, there will be a change in both the patient and the primary caregiver’s lives and routines. Initially, the patient may still live in their own home, but soon either the primary caregiver will have to move in with them or have their loved one relocated to their home.

When is it appropriate?

Dementia is a disease that usually presents more than one stage. As time passes, the condition usually declines and the person suffering requires increasing care. Studies show that 80% of Americans prefer their loved one remain at home or near them, turning them and their family into the primary caregivers. This is appropriate in the early stages when the patient is still able to do most of the things by themselves and, depending on the condition, it may be appropriate until the end.

The most important thing is to start the caregiving process as soon as the dementia is diagnosed. During the initial stages, being present and helping with some daily and household chores may be enough. However, over time the primary caregiver will be required for more specific and difficult tasks, such as bathing, feeding, caring medically for the loved one. Nevertheless, if the patient does not require special care arrangements or if it can be arranged at home itself and if the primary caregiver has is able to dedicate their time, this type of caregiving may be the most appropriate and the most affordable.

What are the pros and cons?

Pros:

Often having a familiar setting and people around the patient can help them cope with their condition better. They will also be more comfortable when going about their daily activities. Studies have shown that there are several benefits to having a family member as the primary caregiver:

  • They feel more helpful and needed
  • They learn new skills
  • The caregiving process develops a different and more positive approach to life
  • The caregiving process strengthens the relationship between the caregiver and their loved one
  • The caregiver feels an increased peace of mind

Cons:

As with any arrangement, there are some downsides to having a family member as a primary caregiver. Studies have shown that it can lead to mental (high levels of depression and anxiety) and physical degradation to the caregivers. Additionally, due to the change in the life, they may experience:

  • Loss of personal freedom
  • Increased stress levels
  • Less time for personal and social activities
  • Guilt (when unable to help because of the lack of time or skills)
  • Decreased time available to spend with other family members
  • Increased financial strain (when the caregiver needs to quite their job)
  • Increased isolation due to the absence of social routines and restricted mobility

How to manage the medical care?

As the primary caregiver, it falls on the family member to handle their loved one’s complete care, including medical care. For example, you will have to take them to their medical appointments, be the communication point for the doctors, keep track of their medical history, and more. As such, it is very important to keep all the patient’s medical records well organized and properly documented.

How to streamline meals?

Tapping on local organizations that provide meals for the elderly at home such as Meals on Wheels is a great way to reduce the burden on the caregiver. These organizations deliver nutritious food, taking the stress off the caregiver to prep and cook on a consistent routine for the one in need. These are easy low-cost solutions. To find a local meals on wheels chapter, go here. Typically, local organizations also provide these types of services. 

Other solutions that are a little more expensive include purchasing pre-made meals that require minimal prepping and no shopping cutting out the need to think through meals for the week, going to the store and lowering cooking time. Here are some companies that provide this service, several of which provide a free trial period where you can test it out to see if it fits with you and your loved ones routine. 

How to Dementia-Proof the home?

A home for a person with dementia is their sanctuary.  As the disease progresses, the person spends more and more time at home then they previously did and at the same time their symptoms progress limiting their ability to distinguish between hazards in the home. 

It is critical that precautions are taken to create a safe environment for the person with dementia and the other people living in the home. 

In our 11 Top Safety Concerns for Dementia with Solutions post, we go deep into the details of how to quickly and cost-effectively create a hazard free environment where everyone will have peace of mind.

What are the associated costs?

Out of the many types of care arrangements available, caregiving by a family member is possibly one that is least strenuous financially. Other than medical cost, the patient’s upkeep make up the major portion of the cost. This includes their medications, doctor’s appointments, dietary needs, hygienic needs, tools and resources for their physical and mental therapy, and more. Though, as the dementia progresses, additional costs will arise, both medical and otherwise. 

While financially, this option can be favorable, there are some non-monetary costs that the caregiver will have to consider also. This includes the mental and physical strain that the primary caregiver will be put in. Caring for a dementia patient can be tiring, time-consuming, and stressful. It will also expend them emotionally. Therefore, when going for this option, it is important to evaluate whether a family member can cope with both the financial and non-financial challenges that come with it.

When is it time to reevaluate?

When deciding to make changes to a dementia patient’s care arrangements, there are a few things to be considered. Firstly, the progression of the disease and the corresponding needs of the person. Secondly, the capability of the primary caregiver to provide the necessary attention for their loved one needs to be evaluated. If the patient has reached a stage where they require constant supervision and the caregiving family member is unable to accommodate the need, it may be advisable to consider other arrangements.

Sometimes, while the family member may have the time, they may not necessarily have adequate knowledge to handle the symptoms or care for a dementia patient. Or in some cases, the toll it takes on them might be more than can be handled. Therefore, in order to provide the best possible care, the primary caregiver can opt for assistance from other family members, respite care, assisted living, or nursing homes. In addition, family caregivers should attend support groups to get more information and help.

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FAMILY, FRIENDS, AND VOLUNTEERS AS CAREGIVERS

What is it?

Some dementia patients need a full-time caregiver while others need it just for certain daily activities. Sometimes the designated primary caregiver isn’t able to be by the patient’s side as much as needed. In these cases, other family members, friends, neighbors, or volunteers may be available to help out. This normally can be done on a rotating schedule basis.

In this type of care, one or a few family members are leading the charge of coordinating and arranging the caregiving process. They will schedule to set when and where family members, friends, and volunteers rotate to care for the patient. There are some volunteering associations, which have some service programs (transportation, in-home support, caregiver support, and training) in order to help families with fewer possibilities. In addition, sometimes these associations offer training programs for volunteers in order to provide the best care service for people with dementia.

When is it appropriate?

This type of care can be very helpful for primary caregivers who dedicate all of their time and energy to meeting the needs of a loved one while postponing their own needs, which can jeopardize their own physical health and emotional well-being. It can also be a good choice for primary caregivers who need to work or have duties outside of the home. The additional helping hands can take turns caring for their loved one. It will also allow for the primary caregiver to take some time off and ease the strain on them. 

What are the pros and cons?

Pros:

  • The secondary caregivers learn new skills while caring for the dementia patient
  • The secondary caregivers get an opportunity to strengthen their relationship with the patient, especially if they are a family member or a close friend
  • There is an increased peace of mind that your loved one is being taken care of by people who are close to them
  • Eases the pressure on the primary caregiver
  • Allows the primary caregiver some time for themselves
  • It is a form of unpaid assistance, which won’t strain finances

Cons:

  • You may not get to spend as much time with your loved one as you may want to
  • Feeling guilty for being unable to help due to lack of time or skill
  • Difficult to coordinate with various secondary caregivers and their schedules
  • The patient may experience difficulty adjusting to new carers, especially if the dementia has progressed further. 

How to coordinate the care?

This type of care coordination involves deliberately organizing patient care activities and sharing information among all of the participants concerned to achieve a safer and more effective care. While it can be challenging to coordinate among a number of caregivers, there are several approaches and resources that can be helpful in simplifying the process. These include:

  • Establishing accountability and agreeing on responsibility
  • Communicating/sharing knowledge among all caregivers
  • Creating a proactive care plan
  • Monitoring and following-up, including responding to changes in patients' needs
  • Linking to community resources
  • Using calendars and schedules to create a clear system - Google Calendars or the Apple Calendar features are great for this, are free of cost, and integrate well into peoples Smartphones.
  • Making use of various apps and software available online such as:

How to find volunteers?

Reach out to local senior organizations, local alzheimer's chapter, local religious organizations to see if there are programs for in-house volunteers already established.

There are organizations and websites that provide directories of volunteers ready to assist - simply include your location information and start reaching out. It doesn't hurt to ask for help. Here are a couple: 

How to streamline meals

Tapping on local organizations that provide meals for the elderly at home such as Meals on Wheels is a great way to reduce the burden on the caregiver. These organizations deliver nutritious food, taking the stress off the caregiver to prep and cook on a consistent routine for the one in need. These are easy low-cost solutions. To find a local meals on wheels chapter, go here. Typically, local organizations also provide these types of services. 

Other solutions that are a little more expensive include purchasing pre-made meals that require minimal prepping and no shopping cutting out the need to think through meals for the week, going to the store and lowering cooking time. Here are some companies that provide this service, several of which provide a free trial period where you can test it out to see if it fits with you and your loved ones routine. 

How to manage the medical care?

Care coordination is team-based activity designed to assess and meet the needs of patients and helping them navigate effectively and efficiently through the health care system. Normally, there is a primary caregiver or family member responsible for managing and coordinating all care, including scheduling clinical visits and communicating any changes to the doctor. Generally, this caregiver is the one who is responsible for taking the person with dementia to appointments. If this person doesn't have the availability to take the patient to the clinic, this task should be assigned to another person and they will have to share all clinical information and keep all the medical documentation organized. 

Clinical coordination also involves determining where to send the patient next, what information about the patient is necessary to communicate among health care entities, and how accountability and responsibility are managed by all health care professionals (doctors, nurses, social workers, care managers, supporting staff, etc.).

What are the associated costs?

Like having family as the full-time caregiving entity, this option is also one of the most affordable types of caregiving available. Other than the medical and general upkeep cost of the dementia patient, there are no other significant cost involved in having multiple caregivers from the family, friends, and volunteers’ circle. Providing payment for care given by friends or volunteers is purely optional and can be determined by the primary caregiver with the relevant individuals.

In terms of physical and emotional cost of caregiving, this option weighs lighter on all individuals involved compared to having the primary caregiver being look out for the patient 24x7.

When is it time to reevaluate?

Coordination of care will not be enough for a dementia patient as the disease progresses. As the symptoms of dementia worsens, more qualified caregiving and specialized medical assistance will be necessary, which can be quite difficult for family and friends to provide. Additionally, the routines and availabilities of the various caregivers may change over time thereby making it increasingly difficult for them to be a caregiver. In such instances, you should firstly consult with the patient’s doctor for suitable alternative options such as adult day care or others.

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ADULT DAY CARE

What is it?

Typically, an adult day care facility is a non-residential center that provides for the daytime living needs of dementia patients, including health, nutritional, and social needs. These facilities employ a professional staff that provides meals, meaningful activities, general supervision, social activities, and medical support.

These centers usually operate during normal business hours, five days a week. Some centers may offer additional services during evenings and weekends. Adult day care provides caregivers with much-needed respite, giving them time to run errands and do other activities, spend time with family and get away from the stress of caregiving.

When is it appropriate?

This option is especially appropriate when the primary caregiver or family member needs additional support due to work schedules, lack of time, long distances, day duties like taking care of children, and other activities. In order to ensure that the care recipient will still receive the proper care in a safe and friendly environment, the family can choose an adult day care center to relieve the caregiver by giving them the time to manage their other responsibilities and activities. It is also appropriate as these centers provide medical assistance and social activities that will be essential to the dementia patient.

What are the pros and cons?

Pros

  • Provides a safe environment
  • The staff will have proper knowledge on caring and attending to the needs of dementia patients
  • The staff is trained to pay attention and look for signs of trouble or dangerous behaviors
  • Provides an avenue for daily activities, exercise, music, and social interaction
  • Most adult day care centers serve meals throughout the day
  • Provides assistance with personal care and toileting
  • For full-time caregivers, it can provide a much needed break and time to rest or catch up on other responsibilities.
  • For caregivers who work, these centers are very helpful to balance a job with caregiving duties

Cons

  • The patient will have to be transported to and from the day care center on a daily basis. This may prove to be a challenge on some days
  • During the initial change, patient may be resistant to attending the day care center due to being in an unfamiliar environment.
  • The dementia patient may feel tired or burned out at the end of the day due to the activities involved
  • Quality of service may be different between facilities
  • Family members may be concerned about the safety and supervision that their loved one will be receiving.
  • Family members may feel guilty for transferring the responsibility of caring for their loved one to strangers.

What are the different types of adult day care facilities available?

In general, there are three main types of adult day care centers, each with a different primary purpose: 1. Those that focus on social interaction 2. Those that provide medical care and 3. Those dedicated to Alzheimer’s care. The services provided in each center varies according to the center’s area of focus. At the same time, not all the centers provide all services and with the same quality.

Some of the services include counseling (they may offer guidance on outside resources and arrange for supportive care in the home), medical services (help with medication, blood pressure checks and physical, dental, foot, eye or ear examinations), nutrition (they may provide nutritious meals and snacks), personal care (hairstyling, toileting, eating, showering and other personal care tasks), activities (daily activities may include music, art, recreation, discussion and support groups), behavior management (the may be prepared to deal with dementia problems like wandering, incontinence, hallucinations, sexually inappropriate behavior or speech difficulties), and others. Often, many of these centers are affiliated with home care agencies, nursing facilities, medical centers and other senior service providers as well.

Occasionally, adult day centers will also provide transportation to and from the persons house, picking up the person in the morning and dropping them off in the afternoon. 

How and where to find an adult day care facility?

In order to find the appropriate adult day care facility for your loved one, you will have to have a good level of understanding about your options by getting information through your local dementia association or online resources. You can also ask your loved one’s doctor for recommendations and other caregivers’ experiences to be more informed.

You will need to consider both your needs as a primary caregiver and the needs of your loved one based on the progression of their dementia as the services provided by different adult day care centers will vary. You will need to evaluate which one offers the right combination of services for both parties’ needs. Make sure to visit a number of centers to gather more information on their services and clarify any queries that you have. You can also consider a trial period—for example, twice a week—with a service before making your final decision.

To find an adult day care close to you, simply search for Adult Day Care Near Me on Google or use the following directories mentioned below. Please note that some of these websites use aggressive sales tactics and receive commission if they place your loved one in a participating facility (the facility pays to be a part of their network) (a practice that we at Dementia Aide find unethical since it does not put the patients needs as the priority) so refrain from sharing your personal information with the website, a be skeptical of paid advertisements or placements on their directory. Be on the lookout for the best care for your loved one that works well for you the caregiver and make sure that is always the priority, nothing else.

  • Google Search "Adult Day Care Near Me", or "Adult Day Care (enter your location)"
  • Caring.com
  • APlaceforMom
  • Yelp - Type in "Adult Day Care" in the Find box at the top and your location in the Near box at the top. Includes reviews from the public. 

How to manage issues with adult day care

Adult day care can be a great option for caregivers who are unable to be present full-time. However, many refuse to consider this option. Some worry that their loved ones will resent participating in such a program, while others feel guilty at the thought of leaving their loved ones in another person’s care.

Adult day care can improve the care recipient’s overall behavior and provide the caregiver with much-needed time off. In order to work correctly, the caregiver must search and choose the best facility for their loved one. Keep in mind that the person with dementia will need time to adjust to the experience of going to the center. Some people may resist going at first, but they often look forward to the visit after several weeks of attending, meeting people, and joining in activities.

What are the associated costs?

Most adult day care services charge by the hour, while others charge a monthly rate. The average cost of adult day care is $64 per day, but individual facilities can vary significantly depending on the part of the country the center is in and the services offered. Some centers are less expensive because they are government funded or allow for income based payment plans, while programs that offer extensive care or additional specialized services are usually more expensive.

Alternatively, adult day care is normally less expensive than hiring an in-home health nurse or moving the dementia patient to a nursing facility. Also, long-term care insurance may cover some of the costs if medical personnel is involved.

When is it time to reevaluate?

At some point, you will have to reevaluate if the person with dementia may need more care than the center can provide. Center staff and support groups can help evaluate your needs for future care. As the disease progresses, the dementia patient will have more needs and face increasing difficulty with daily activities. Transporting them to and from the center will become increasingly challenging. They may also need full-time care and medical support. In such cases, you will have to consider other options such as moving the patient to a nursing facility or having in-home help.

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PAID IN-HOUSE CAREGIVERS (PART-TIME & FULL-TIME)

What is it?

Often dementia patients who are still in the early stages of the disease progression want to keep living in their house. However, they will very soon need help with their daily activities and chores such as cooking and bathing, among others. While it is possible for a member of the family or a friend to give them the support they need, caregiving can be an expensive and exhausting task, especially if the caregiver has to quit their job in order to do so. Many times, quitting their job is not an option, as it can cause further financial strain, so they may have to appeal to paid caregivers. There are two types of caregivers:

Licensed healthcare professionals:

These caregivers are professionals that are qualified to provide your loved one with the medical care they need according to proper standards. They may be nurses, physical therapists, or social workers.

Non-medical caregivers:

These caregivers are not healthcare professionals, but they may be qualified for other aspects of caregiving. They may assist with daily activities and chores, allowing your loved one to live at home for as long as possible. Some of the services that part-time or full-time caregivers may provide include:

  • Companionship
  • Light housework
  • Meal preparation
  • Medication preparation and reminder
  • Picking up prescriptions
  • Making medical appointments
  • Assistance with bathing and grooming
  • Mail opening
  • Transportation
  • Caring for their pets
  • Laundry and hygiene caring

When is it appropriate?

This type of care is appropriate when your loved one is still able and wants to be at home. Sometimes, your loved one doesn’t want to hear the words “nursing home” or doesn’t want to give up the car keys despite the fact that he/she shouldn’t be on the road by himself or herself. In these situations, the best idea is to hire a caregiver that may be there with them, care for, and protect them, making you more at ease. However, it is still important for the patient to be surrounded by family and friends.

The key difference between a part-time and full-time in-house caregiver is the number of hours they spend with the patient. Part-time caregivers can be hired only to attend to the patient for a certain number of hours each day. This can be during the daytime when the primary caregiver is away at work or when they have additional family members to care for or it can be for nighttime supervision. Overall, it is based on the patient’s need.

As for full-time caregiving, the caregivers generally live in the same house as the patient and care for them 24x7. This is usually appropriate when the primary caregiver many other responsibilities to handle or when the patient’s dementia progresses to the point where they require constant supervision and assistance.

What are the pros and cons?

Pros

  • Safer for the patient to be in a familiar environment
  • Allows you to be more peaceful with the idea of receiving care from a non-family member
  • Enables your loved one to be independent for an increased amount of time
  • Your loved one continues to live in the house they know
  • No need to shuttle to and from external facilities for the patient’s care

 Cons                                                                                                                                 

  • Can be an expensive service, depending on the patient’s needs
  • Might be difficult to find a trustworthy caregiver
  • Patient may have a tough time adjusting to an unfamiliar person as a caregiver
  • May be difficult to find the right caregiver within the area of residence

How and where to find the caregivers?

Although it can be a challenge to find a caregiver with the right fit for your loved one, there are many resources that you can take advantage of to find the service you need. Other than the patient’s doctor and local dementia association, there are several tools, apps, and online resources to find professional caregivers. They include:

There are large national caregiver placement agencies that help create a system of caregivers for your loved one to remain at home. Two of the largest ones are:

Although large agencies are great in that they can quickly provide replacements for caregivers that may need time off or are not compatible with your loved one, smaller more local caregiver agencies may provide more personalized care and may be more cost effective. To search for a local agency - Google: Caregiver Agency in (Name of Location)

To coordinate schedules with the caregivers and to keep tabs of the care they are providing, use calendars and apps to ensure routines are being effectively enforced completed. 

  • Using calendars and schedules to create a clear system - Google Calendars or the Apple Calendar features are great for this, are free of cost, and integrate well into peoples Smartphones.
  • Making use of various apps and software available online such as:

How to manage issues with in-house hired caregivers?

In a similar manner to having secondary or volunteer caregivers, the primary caregiver will have to coordinate properly with the hired caregiver in order to avoid any disturbances to the dementia patient’s routine and medical care. Information must be shared adequately between primary and hired caregiver. They must also work together as a team to ensure the needs of the loved one is met. Keeping well organized and documented records of the patient’s needs, medical and otherwise, is also very important in this case.

Being clear from the start about the expectations for the level of care and specific instructions you require is critical to ensuring a good relationship between yourself, the caregiver, and your loved one. Do not underplay the level of care your loved one requires and be open about potential deteriorations that the caregiver might eventually need to be prepared to deal with. Providing the caregiver with checklists of daily tasks and schedules that must be completed is essential.

Also make it very clear that use of cell phones and other electronic devices for personal pleasure is not acceptable while they are caring for your loved one. In this day and age, it is unfortunately very common for the caregiver to distract themselves and pass the time on their phones or watching movies instead of paying undivided attention to your loved ones needs. 

What are the associated costs?

One of the biggest issues where paid caregivers are concerned is the associated cost. Depending on the residence location, duty hours, and daytime or nighttime requirement, the costs may vary between 700$ to 3000$ a week. The cost of a caregiver can vary from $10-30/hour depending on their level of training and experience. On average, a caregiver through the national agencies costs $22.50/hour. Some medical insurances cover certain types of in-home caregiving. You should obtain more information in this regard from your insurance provider.

When is it time to reevaluate?

There may come a time when you may have to consider if this type of caregiving is adequate for your loved one. As time goes by, their needs will increase and home-based caregiving, although given by a professional or somebody who is experienced in the area, may not be enough. It is, however, a decision you have to make while thinking mainly about your loved one’s well-being and, as difficult as it may be, sometimes you have to consider possibilities such as nursing homes or appropriate spaces with a more specialized team to take care of your loved one.

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RESPITE CARE

What is it?

Respite care or replacement care is a type of care developed to give the primary caregiver a temporary rest. In most cases, the primary caregiver tends to be a member of the patient’s family. It is important to realize that everybody needs a rest, especially a caregiver.

When is it appropriate?

Whether is for a short period of time, where the primary caregiver needs to run errands or complete necessary chores, or for a longer duration, where they need much needed rest or holiday, respite care can be a suitable option. Although many carers think they have to endure it all as the patient is their responsibility, these kinds of solutions exist because it’s impossible to do a good job caring for someone while the caregiver is not in their best condition and is in need of rest. There is no shame in asking for help or temporarily putting someone else in charge of your loved one’s wellbeing.

What are the different types of respite care available?

There are many types of replacement care available, depending on the patient’s need and area of residence. In order to be fully informed before making a decision, it is advisable to talk to a professional such as a social worker, the patient’s doctor, and your local dementia association. Below are the different types of respite care available:

Care at home:

In many dementia cases, this is one of the preferred types of replacement care, since it doesn’t involve changing the patient’s routine or surrounding environment. Similar to having a part-time in-house caregiver, they may be a personal assistant, a health care professional, support worker, or paid caregiver who offer this type of service. They may, among other things:

  • Come during a specific period of the day, giving the main carer a rest in order to go shopping, go to medical appointments, do chores, rest, etc.
  • Spend time with your loved one and engage in activities both inside and outside home, depending on their needs
  • Care for your loved one during the night in order to allow the primary carer to rest
  • Stay with your loved one for a specific period of time in order to allow the primary caregiver get some or go on a holiday.

Care away from home:

  • Day Centers

This type of replacement care usually involves a qualified team to take care of people with dementia. They may also provide various types of medical support, therapies, and include social activities. Initially, the dementia patient may have some difficulties adjusting to the new routine and new environment, but with encouragement and support they can get used to it and even grow to like it.

Try talking to your local dementia or Alzheimer’s association to get more information about day centers to get an insight of how things work and where you may find one that will fulfill you and your loved one’s needs.

  • Holidays and Short Breaks

This type of replacement care is slightly different in that, as the name suggests, your loved one will experience some type of holiday or short break from their daily routine. Instead of simply being in a day center or remaining at home while the primary caregiver takes a break, the patient themselves get to go on a holiday. There are associations that organize this sort of events and offer these services. They include support with caring tasks and are dementia friendly.

However, this type of replacement care requires a lot of planning. It is important to talk with the service provider to prepare the necessary items. Initially it could be difficult for your loved one to adapt, and so it is very important to be prepared for this kind of situation.

  • Care Homes

Another option is registering your loved one in a care home. These homes usually have a qualified team and dementia friendly installations. It allows for your loved one to stay at the care home while the primary caregiver goes on a holiday or takes a break. This type of care may include services such as:

  • Assistance with personal care such as eating, dressing, and bathing
  • Assistance with medical issues. There are homes that have a nurse on site at all times
  • Some homes are specialized in dementia cases and have infrastructure and personnel who are qualified to take care of your loved one.

Some homes have extra beds in their installations and may accommodate your loved one during the period of your need. However, it can be difficult to obtain a place in short notice due to room availability. As such, planning in advance is very important.

Other options:

  • Shared living

This type of care involves your loved one staying at another caregiver’s residence for a period of time while the primary caregiver rests or goes on a holiday. As the availability of another caregiver depends on your location, it would be best to get in touch with a social worker, your local dementia association, or an appropriate association such as Shared Lives for assistance.

  • Carer’s emergency replacement care scheme

Local authorities or caring association may offer services of caring for your loved one in case of an emergency—usually for a duration between 48 and 72 hours. However, this type of care may depend on your location. Therefore it is best to get information on this ahead of time in order to be prepared during emergencies.

How and where to find a respite care facility?

You can usually start your search for a respite care facility by seeking information from the patient’s doctor, a social worker, or your local dementia or Alzheimer’s association. One you have some options available, it is best to visit these facilities and meet with the staff and find out about the services and care level available at each facilities. Thereafter, you will need to evaluate which facility is suitable based on you and your loved one’s needs.

Please note that some of these websites use aggressive sales tactics and receive commission if they place your loved one in a participating facility (the facility pays to be a part of their network) (a practice that we at Dementia Aide find unethical since it does not put the patients needs as the priority) so refrain from sharing your personal information with the website.

What are the pros and cons?

Pros:

  • Provides much needed rest for the primary caregiver from the daily responsibilities of caring for a dementia patient
  • Allows for time to focus on household chores, children, shopping, etc.
  • Time for holidays, if needed
  • An excellent opportunity to introduce in your loved one’s life a caregiver or an institution that may be needed in the future in case of an emergency

Cons:

  • Sometimes, it’s difficult for the caregiver to admit they need a break
  • It implies a change in the patient’s routine, which may lead to a period of instability and confusion
  • Availability of respite care may be limited and there may be waiting lists
  • The possibility of rejection of the temporary carer by the patient

What are the associated costs?

The costs associated with this type of caring may vary. Some sources point to values between 75$ to 200$ a day. This is why it is so important to get the correct information. It is also possible to obtain some level of funding. In some cases, respite care may be funded or provided free of charge by the local authorities, however, many of them are means-tested. This means the person with dementia may have to contribute and may have to pay, but the carer should not be charged. However, the carer can be asked to pay for the respite care, depending on certain criteria. There may also be grants available to cover part or whole of the respite care cost. In any case, the contract must be well studied in order to prevent future disagreements or extra costs.

When is it time to reevaluate?

It may be time to reevaluate the respite care option in situations where the dementia patient is unable to adjust themselves to the temporary change in caregiver or new environment. It can also be the case when the progression of their dementia requires more specialized care, medically and otherwise or when the respite care facilities in your area no longer suit the needs of you and your loved one.

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HOSPICE CARE AT HOME

What is it?

Hospice care is a type of care that is appropriate for a terminally ill person or a person whose life expectancy is less than six months. Although many people think hospice care accelerates death, it is actually one of the most recommended types of care one could employ when a loved one’s prognosis indicates a short life expectancy. It is a type of care that will provide a dignifying, joyful, and less stressful time towards the end of someone’s life. Usually, when receiving this type of care, the person is no longer receiving treatment for the illness per se. rather, it is a type of treatment centered in the relief of pain and symptoms. A common misconception is that hospice is place where people go, although there are a few facilities - hospice is attached to the patient, regardless of their care arrangement. The hospice team will care for the person weather they are at home, or out of the home in a care facility. 

When is it appropriate?

After talking with your physician and understanding the prognosis, you should start planning ahead. In many cases, the person is stable and doesn’t want his or her last days to be in an impersonal hospital, surrounded by strangers and not being able to see their loved ones when they want to. Thus, many people decide they want their last days to be at home. On the other side, all their loved ones want is for them to be as comfortable as possible and receive the best caring possible. While during the early stages of dementia, this type of care can be readily avoided and be replaced with other types of care arrangements, during the last and final stage of dementia, this may be the best option for the patient’s care.

What are the pros and cons?

Pros:

  • Gives your loved one the best environment possible during the end of their life
  • The availability of an interdisciplinary team who can help and guide you and your loved one
  • The availability of 24 hour care, where there is usually a nurse on-duty
  • Tends to be more affordable that other types of care facilities.

Cons:

  • Hospitalization is not encouraged once the patient has been admitted to hospice care
  • Some exams may not be covered by the services, implying an additional cost if needed

What are the different types of hospice care available?

Hospice care usually includes an interdisciplinary team composed of nurses, social workers, caregivers, and others, who come and visit your loved one several times a week. Some of the services offered may include:

  • Nursing Care

Nurses evaluate medication and symptoms and are able to explain what is happening. They also act as a link between you, your family, and the physician

  • Social Services

A social worker may counsel and advise the patient and family members and make sure you have access to the resources you need

  •  Physician Services

A doctor approves the plan of care and works with the hospice team

  • Spiritual Support and Counseling

This is for individuals who may need spiritual support towards the end. There are qualified clerical personnel who may come and visit, making sure the patient is being able to resolve and talk about unfinished business and say goodbye to their loved ones

  • Home Health Aides and Homemaker Services

This service provides help with activities such as bathing, dressing, and other personal care

  • Trained Volunteer Support

People who are available to listen, offer compassionate support and assist with everyday tasks such as shopping, babysitting, and carpooling

  • Physical, Occupational, and Speech Therapies

Hospice specialists can help develop new ways to perform tasks such as walking, dressing, or feeding) that may have become difficult due to their dementia

How and where to find a hospice care agency or facility?

When faced with this type of a situation, the primary caregiver should consult with the patient’s doctor, a social worker, friends, and local dementia associations to obtain more information on the hospice care agencies or hospice facility available in their area. It is the Power of Attorney's choice in what hospice agency they wish to have provide services for their loved one. Occasionally, if a dementia patient is in a care home, the facility recommends a hospice agency they typically work in. Arrangements should be started earlier so as to keep the transition for the patient as smooth as possible.

Please note that some of these websites use aggressive sales tactics and receive commission if they place your loved one in a participating facility (the facility pays to be a part of their network) (a practice that we at Dementia Aide find unethical since it does not put the patients needs as the priority) so refrain from sharing your personal information with the website, a be skeptical of paid advertisements or placements on their directory. Be on the lookout for the best care for your loved one that works well for you the caregiver and make sure that is always the priority, nothing else.

What are the associated costs?

Hospice care usually costs less than other forms of professional care, since the team only delivers the services the patient or their family asks for. In any case, the values may vary between 65$ and 150$ per day. However, it also depends on the services and time needed. Medical insurances typically cover hospice care fully - check with your loved ones provider to asses their cost coverage, There are various financial aids available to help cover the expenses. Depending on your residence area, there could be financial support from the community, related dementia associations, and insurance coverage.

When is it time to reevaluate?

Hospice care generally tends to be the choice that primary caregivers can opt when their loved one has neared the end of their life. Therefore it is usually the last stage and type of caregiving a dementia patient receives, either at home itself or at a hospice care facility.

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MOVING YOUR LOVED ONE OUT OF THEIR OWN HOME

There will come a time when the aid and support you provide for your loved one will not be sufficient anymore. This and other reasons may bring you face to face with the decision of moving your loved one out of their home to a place with a qualified team that can provide the care needed for them.

There are some things to consider before choosing to move your loved one out of their house. You should remember that in the beginning of the process, there will be a period of confusion and difficulty adjusting to the change, including spatial and routine changes. However, with patience and time your loved one should be able to transition and assimilate to their changes.

After moving your loved one out of their own home, you can consider a few options concerning their home. Selling or renting it out are some common choices. It will also enable you to cover the part or whole of the finances for your loved one’s care services. With regards to renting it, there are several ways in addition to the traditional method, such as Airbnb or Craigslist, which you can consider.

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MOVING YOUR LOVED ONE INTO YOUR HOME OR MOVING INTO YOUR LOVED ONE'S HOME

When your loved one lives alone and can no longer continue to live independently, but you do not consider a nursing home or equivalent, you can either choose to move your loved one to your home or move to your loved one’s home, in order to provide better care. In any case, the first thing to remember is that you have to make the home dementia friendly. This means that you should:

  • Move all the unneeded furniture out and clear up space where your loved one usually stays during the day
  • Make it easier for your loved one to get to the bathroom, by choosing the nearest room for them
  • Install equipment around the house, the room, and the bathroom to help your loved one navigate their way around independently
  • Remove all the keys from the locks to prevent them from heading out unsupervised
  • Ensure that the toilet is visible and there are no large mirrors that may confuse your loved one
  • Ensure your loved one is not left unattended

Initially after the move, the changes in routine, surrounding people, and/or environment can cause heightened confusion for the dementia patient. They may become disoriented or upset. In such situations, it is important for you to remain calm and patient with your loved one. They will need some time to calm down and assimilate their selves to their new surroundings.

Emotionally too, both you and your loved one will experience changes. There may be initial challenges in terms of coordinating between the two of you. But it will also give you a chance to become closer as family. Change is never easy, especially for a dementia patient, but with time, they will be able to adapt to it.

 

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