Alzheimer’s Grief, Loss, and Bereavement

(Alzheimer’s Society) Friends, family and other people close to a person with dementia may experience feelings of grief, and similar emotions related to loss and bereavement. These feelings can occur from the point of diagnosis through to the person’s death, and beyond. They may even occur before the diagnosis, as symptoms start to develop.

People with dementia may experience grief at the point of diagnosis, and while living with the condition. They may also experience grief when bereaved by the death of someone close to them.

This factsheet is for carers, friends and relatives of people with dementia. It looks at some of the feelings carers may experience and suggests ways to cope. It also looks at supporting a person with dementia to cope with grief and bereavement.

Grief

Grief is a normal response to a significant loss, but can become a complex psychological and emotional experience. It is common for someone who cares for a person with dementia to experience grief. This can occur while they are caring for the person and after the person has died.

Carers may experience grief as the person’s dementia progresses and increasingly affects their relationship with the person. They may grieve for the losses they and the person with dementia experience. Some carers may feel in a continual state of grieving.

The type of grief a carer may experience can depend on a range of factors such as their relation to the person (eg spouse, partner, sibling, child or friend), the type of dementia the person has, and the stage of dementia.

Grief can be difficult to detect as it can be shown in many different ways, including:

  • helplessness/despair
  • withdrawal
  • anger/frustration
  • guilt
  • denial
  • not acknowledging losses
  • longing for what has been lost
  • sadness
  • acceptance.

It is important to acknowledge feelings of grief when they occur. It is a complicated and highly individual experience – there is no right or wrong way to grieve. Carers may find that it changes over time.

People with dementia may also experience grief as their condition progresses. They may grieve for the loss of abilities, skills and independence. They may develop a sense of isolation as their environment becomes more unfamiliar and confusing. They may be frightened about what the future holds.

Anticipatory Grief

People with dementia and carers sometimes experience grief in anticipation of the losses the condition may cause. This is known as anticipatory grief. For carers this can happen throughout the course of dementia, and a person in the early or middle stages of the condition may experience it too. Some evidence suggests that carers who experience anticipatory grief may cope better with the grief they experience after bereavement, though this grief may still be painful. Sometimes experiencing anticipatory grief may also increase the possibility of a carer becoming depressed. It can help for carers to discuss their feelings while they are still caring for the person with dementia.

Loss

People can experience strong feelings associated with loss when a person close to them develops dementia. It can sometimes be more difficult to manage these feelings than it is to cope with practical aspects of caring. Depending on the carer’s relationship with the person, and their individual circumstances, they may experience the loss of:

  • their relationship
  • intimacy
  • companionship, support and special understanding from the person
  • communication between themselves and the person
  • shared activities and hobbies
  • freedom to work or pursue other activities
  • a particular lifestyle
  • a planned future
  • previous relationship roles.

Loss and grief can play a part in someone’s ability to cope with caring. Some losses, such as the loss of meaningful, interpersonal relationships with the person with dementia, can result in grief that may be more difficult to manage than the person’s actual death.

As dementia progresses, a relationship may move from one that was mutually supportive to one where the carer takes on more responsibility. The person with dementia may become increasingly dependent on their support. This can be very difficult to adjust to.

It’s important that carers seek support for emotions associated with loss. Family members, friends or professionals (eg a dementia support worker) could provide this. Attending support groups with other carers, or accessing an online forum (such as Alzheimer’s Society’s Talking Point) can be good ways to seek support and information.

It can be difficult for a carer to manage these feelings if others don’t see the feelings as significant, or don’t appreciate or understand them. Those around the carer may be in denial or not fully understand the impact dementia has. This can lead to a lack of support for the carer.

Ambiguous Loss

Some carers also struggle with a more psychological sense of loss in the relationship (also known as ambiguous or unclear loss). The personality of the person with dementia is seen as lost or considerably changed, but they are physically still present. Ambiguous loss may result in feelings of unresolved grief, and can also stop people from accessing help and support.

Emotions

It is normal for someone caring for a person with dementia to experience feelings of grief. They may cope well at some times, and at other times feel overwhelmed by sadness or anger, or may simply feel numb. They may feel resentful at how things have turned out and the difficulties they have to face. Some people may be shocked to find that they feel this resentment. It’s important to know that caring for a person with dementia can have a huge emotional impact, and feelings like these can be a normal part of grieving. Anyone experiencing such feelings may be under a great deal of stress, and may need to seek some emotional support.

Dealing with Emotions: Tips for Carers

  • Try not to bottle up your emotions: talk about your feelings. This may be with aprofessional (eg a dementia nurse), other carers (eg via a support group), a friend or family member.
  • Try to make time for yourself each day. This could be relaxing, walking outside, a hand massage or chatting to friends.
  • Consider your own needs. If you feel that you need a break to help you cope, speak to someone about arranging this.
  • Try to focus on the positives, for example things that you and the person with dementia can still do together, or other interests you have.
  • If you’re feeling low or anxious, or are very tired or not sleeping, speak to your GP. It’s important to look after your own physical and mental health.

Residential Care

When a person with dementia goes into residential care, their carer may experience a range of conflicting emotions, including relief, sadness and guilt. They may be worried about how the person will settle in, and whether the care they receive will be good enough. A move into residential care is a big change in the caring relationship, and the carer may miss the person’s presence. They may also feel that they are no longer able to play an active part in the person’s care. All of this may contribute to increased feelings of guilt and sadness.

If someone has been a carer for a long time, the move to residential care can have a profound impact on their role. They may feel lost and have a sense of emptiness, and it can be emotionally draining. Other people may expect a carer to be able to re-establish their life quickly after the person goes into care and may not appreciate how emotionally difficult the situation is. Someone who has been caring for a parent may find it easier to re-establish their life than someone who has been caring for a spouse.

There may also be practical and financial issues to consider when the person goes into care (eg living arrangements) which can affect a carer’s feelings and ability to cope.

Moving to residential care: tips for carers

  • You don’t stop being a carer just because you no longer do the practical day-to-day tasks.
  • If you still want to be involved in caring for the person, speak to the care home staff and discuss how you can work together.
  • You will know the person’s likes, dislikes, hobbies, routines, life history and more. All of this can help care home staff to support the person.
  • Initially, you may want to take some time away from caring altogether. The care home should support you with this and welcome you back when you’re ready.
  • Though you may want to visit the person in their new home, try not to build your life around this. You need to take care of yourself and your needs.
  • Consider attending a support group: the care home may have a group for relatives and carers. These can help you to talk through your feelings about the changes you’re experiencing.
  • You will experience your own feelings in your own way. It is important to know that there is no right or wrong way to feel.

Bereavement

Bereavement at the death of a friend or relative with dementia is a unique and complex situation that everyone will cope with in their own way. It is a normal experience and many people won’t need professional support. A carer’s reaction to the death may depend on many factors, including:

  • their relationship with the person
  • their personal situation
  • the stage of the person’s dementia
  • responses to losses that have already happened over the course of caring for the person
  • the circumstances surrounding the person’s death.

It may feel like the final loss of many, and can also represent a turning point in the carer’s life.

Carers may experience a range of emotions during bereavement, both positive and negative. Emotional reactions to bereavement may include:

  • sadness
  • shock and pain (even if the death has been expected for a while)
  • anger and resentment about what has happened
  • guilt about how the person was cared for
  • numbness, as though feelings are frozen
  • inability to accept the situation
  • feelings of isolation
  • a feeling of lack of purpose
  • relief, both for the person with dementia and for themselves.

Sometimes when a person dies, the carer may not be in a position to fully experience grief, and it can take a long time for feelings to come out. This is called delayed grief. It may happen because:

  • it takes a while to accept the person has died
  • the feelings are overwhelming and suppressed at the time
  • the carer must sort out the person’s affairs and therefore doesn’t have time to grieve.

Delayed grief may especially happen if the carer has cared for the person for a long time.

Carers may find they have a sense of emptiness after bereavement. They may struggle to come to terms with the loss of the person, loss of their defined role, excess free time (loss of past interests and hobbies may make this difficult to fill), and not being in touch with previous relationships because of the time spent as a carer. All of this can add to feelings of loneliness. Some people find it hard to adjust to living without the person with dementia. It can help for them to talk through these feelings with someone they trust.

Some carers may find it helpful to meet with professionals who were involved with the care of the person with dementia at least once after bereavement.

It’s important for carers to be supported to express and explore their emotions after bereavement.

When the Person Dies: Tips for Carers

  • Try to avoid making any major decisions in the early months if you’re still feeling shocked or vulnerable.
  • Take some time to reflect and come to terms with your situation, but try not to isolate yourself.
  • It’s not unusual to think you have heard the person’s voice or seen the person after they have died and while you’re grieving.
  • Keeping hold of items that the person treasured or that remind you of them (such as a watch or a favourite scarf) may help you to keep a sense of connection.
  • Even though you may generally be coping, there may be times when you feel particularly sad or upset.
  • If you find events such as anniversaries or birthdays upsetting, ask for support from friends or family.
  • Stay in touch with your GP. You may be more vulnerable to physical illness, as well as anxiety, stress and depression after bereavement.
  • If you feel your grief is becoming overwhelming, seek bereavement support services.

Readjusting after Bereavement

Life does not return to being the same after bereavement. However, the time will come when the pain eases and a carer feels ready to cope with life without the person who died. Some carers find getting back on their feet easier than others. It takes time to adjust, and how long it takes will vary from person to person. If someone is struggling and time doesn’t seem to be helping, they may want to think about professional support.

Readjusting: Tips for Carers

  • Talk about the person who died, and reminisce about them and the life you shared.
  • Try to eat properly and get enough rest (even if you don’t manage to sleep).
  • Allow yourself space and time to grieve.
  • Take things slowly and ask for help and support, if you need it. Tell people what you need: if you don’t, they may not know how to help.
  • Try to get socially involved and re-establish past interests and hobbies, or consider starting new ones.

If you’re concerned about forgetting the person, there are some things you can do that may help:

  • Talk about the person and your memories of them.
  • Create a photo album.
  • Keep some of their personal belongings.
  • Do something to commemorate them, such as planting a tree or arranging a memorial gathering for those close to the person.

Supporting a Person with Dementia During Bereavement

People with dementia will experience bereavement in a range of ways and their needs will be similar to those of someone who doesn’t have dementia. However, the person’s cognitive difficulties may create unique challenges.

Telling the Person About a Death

When someone close to a person with dementia dies, it raises the question of whether or not to tell them. There may also be the question of how much detail to tell them, especially if the circumstances of the death could cause the person distress. These are difficult situations and there is no one solution that will work for everyone. It will depend on the individual, their situation and what is in their best interests. Whatever decision is made, it’s very important to acknowledge and support the person’s emotional responses.

If the person is not told about the death it may prevent the grieving process and leave them feeling afraid and unsupported when, for example, the person who has died appears to have stopped visiting without explanation. However, telling the person may lead to unnecessary distress and they may be unable to process the information.

Talking over the situation with professionals may help. Whatever is decided, it’s important for the person to be supported as much as possible.

Telling the Person About a Death: Tips for Carers

  • Provide information clearly, simply and without euphemisms (eg ‘passed away’).
  • Use body language and physical contact if appropriate.
  • Try not to give too much information at once.
  • Allow plenty of time for the conversation and be supportive.
  • Be prepared to repeat information.
  • If the person becomes very distressed, try a different approach.
  • Make sure that you are supported as well.

Like anyone, a person with dementia may respond to bereavement in a range of ways. However, how they understand information and adapt to the bereavement may be complicated by problems with thinking and reasoning. However, just because someone has dementia, it doesn’t mean they are unable to feel emotions at the bereavement and experience grief.

The dementia may also interfere with a person’s usual means of coping, so it’s important for them to feel safe and supported. It can also disturb someone’s ability to accept the death, and to vocalise any distress and emotions they’re feeling.

There are many ways that a person with dementia may respond to the death of someone close to them:

  • They may come up with an alternative reason for why the person is no longer around, for example that they’re at work or on holiday. This may be caused by denial, poor memory or confabulation (filling in gaps with things the person believes to be true), or a combination of these things.
  • They may mistake others for the person who has died, eg a son for a husband. This can be caused by memory loss and/or problems recognising people.
  • Changes in the brain mean they may have difficulty regulating emotional responses and may express their grief in different ways such as through theirbehaviour. They may become attached to one possession, eg a coat or an ornament, and not want to be parted from it, or they may refuse to take part in an activity they enjoy, eg singing.

Supporting the Person to Grieve

It may be difficult to know whether a person with dementia is grieving. If they are grieving it’s important to support them to do so. Being involved in conversations and arrangements after the death (eg the funeral) may help the person with dementia take in the loss and start the grieving process. However, if the person appears not to be grieving, it may be best to let them be.

If someone starts to behave in challenging ways, it may be a direct reaction to the bereavement, or a sign of distress that they are not being supported to grieve. It can help for carers to observe the person and see if there are things triggering or maintaining a grief response. Identifying these may help a carer to support the person to grieve, or help them find a way to avoid triggers.

Supporting the Person to Grieve: Tips for Carers

  • Acknowledge feelings and encourage the person to express themselves.
  • Reminiscence can be helpful after a bereavement.
  • Allow the person with dementia to talk/communicate about the person who has died.
  • Giving the person something that reminds them of the person who died may help with feelings of connectedness and can be used to support reminiscence, if appropriate.
  • Consider creative outlets such as art and music. These can help support people to express their feelings and grief.
  • Consider other ways to meet the person’s attachment needs, such as comfort objects, spiritual means and other relationships.
  • The person may find comfort in their spiritual beliefs such as prayer, meditation or faith practices.

If the person’s main carer dies it can lead to lots of upheaval and change in the person’s life. They are likely to need lots of support, guidance and assistance to adjust to these changes.

When a person with dementia experiences a bereavement they sometimes experience and remember a profound shock and sense of bewilderment. At other times they may not recall or understand the loss, but it can still have a strong emotional impact on them, reflected in their behaviour and mood.

Asking for the Person Who Has Died

A person with dementia may forget that someone has died. They may ask about them repeatedly, come up with reasons for their absence (such as being away or having left them), or report them as missing. This can be very difficult for family and friends coming to terms with the death, as well as the person with dementia. If they are told again that the person has died, it may be like hearing it for the first time. How a carer should respond will depend on the individual and what is in their best interests.

Reminding a Person with Eementia of a Death: Tips for Carers

  • For some people, a gentle reminder that the person has died may help. For others this will be very upsetting.
  • Reminders of the funeral, shown and discussed in a supportive way, may help the person to absorb the news. Personal possessions may also help.
  • Recognising and focusing on the person’s emotional state can make knowing what to say easier.
  • If the person is in the later stages of dementia, trying to remind them that the person has died is unlikely to work and may be very distressing.
  • If someone is becoming very upset it may be best not to try and remind them.
  • Support the person through changes in emotion and behaviour. Reminiscence and other creative techniques (eg art or music) can be helpful for this.
  • Look for patterns to when the person is asking. If there is one (eg at 5pm they always had a cup of tea together) you may be able to put techniques in place to help. For example, at 5pm ask the person about hobbies they used to do together to encourage positive reminiscence.
  • Be patient, responsive and aware that adjusting to the loss will take time.

If responding to the emotion or reminiscence doesn’t work, you could try distraction. However, while this may alleviate the stress of the moment, it may not help the grief process in the long term.

Past Bereavements

A person with dementia may forget about a past bereavement, and hear of it as if for the first time. It can feel as though it’s just happened, and they may experience the emotions all over again. They may struggle to process the information that the death happened a long time ago, and be left with the feeling of a recent bereavement. They may also confuse a present loss with a previous one (eg husband with father).

Supporting a person with dementia who is bereaved can present many challenges. However, there are things carers, family and friends can do to help the person feel safe and supported. It is also important for carers, family and friends to address their own needs and feelings of grief during loss and bereavement.

Citation

https://www.alzheimers.org.uk/info/20046/help_with_dementia_care/411/grief_loss_and_bereavement

Factsheet 507

All content © 2017 Alzheimer’s Society.

Caregiving at Home: A Guide to Community Resources

(Family Caregiver Alliance) The diagnosis of a dementing illness or disabling health condition marks a new stage in your life and your family’s life. Important decisions about care arise, along with uncertainty and anxiety. Some choices might need to be made right away. Others lie ahead.

If you’re caring for someone at home, you may be helping your loved one with a range of activities such as bathing, dressing, transportation, and food preparation. In addition, you may have to take care of legal and financial matters such as making medical decisions and handling bills and budgets. Fortunately, a variety of community care options are available to assist you and your loved one.

This fact sheet presents an overview of the different services and programs available to caregivers and individuals with cognitive disorders or other chronic health conditions. Organizations listed throughout the fact sheet can help you locate specific assistance. Additional information is provided in the Resources section at the end of the fact sheet.

Assessing Needs, Values, and Preferences

Defining your family’s particular needs is the first step in determining what kind of help and support will best suit your circumstances. With so many services available to caregivers, you will need to first outline your specific concerns. It’s also useful to think about the values and preferences of your loved one regarding the types of help he or she will accept. It might be helpful to hold a family meeting (see Holding a Family Meeting) to discuss care needs and help with decision making. Try asking yourself the following questions and writing the answers on a sheet of paper:

  • What type of help does my loved one need now to live as independently as possible? (Nutrition services, dressing, bathing, lifting, medication management, supervision, companionship, housekeeping, transportation?)
  • What types of help might be needed in the future?
  • Who in the family will take charge of caregiving and/or make arrangements for care?
  • How much money is available to pay for outside resources? Will insurance cover any services?
  • What days and times do I need help?
  • What kind of assistance can I provide myself?
  • Do I have a job that will affect the amount of care I can provide?
  • What types of help are my friends and family members willing to provide?
  • Can we get used to having a stranger in our home to help us?
  • Can we adjust to someone who speaks a different language?
  • Would a male or female helper be preferred?
  • Do we want out-of-home care? What kind? How often? How long?

Community Care Options

Community care programs and services vary in different states, counties, and communities. Most areas now have support services specifically designed for people with Alzheimer’s, stroke, Parkinson’s, and other chronic health conditions. Each community, however, differs in the services available and their eligibility requirements. This section outlines the main community care options for the care recipient and their caregivers.

Informal care involves the help of friends, family, religious communities, neighbors, and others who can share the responsibilities of caregiving. This “informal” support network can help with specific tasks (e.g., household chores), provide emotional support to you and your loved one, and help the care recipient maintain a healthy level of social and recreational activity. Making a list of your informal “helper” network and their contact information will be an invaluable source of support for routine assistance or in times of emergency.

Information and referral (I&R) helps you identify your local resources. California’s Caregiver Resource Centers (www.caregiver.org/californias-caregiver-resource-centers), national Area Agencies on Aging (AAAs), senior centers, or community mental health programs are good resources that can help you find potential services, such as adult day care programs, respite care, and meals.

Staff members have information about the availability and appropriateness of services, whom to contact, eligibility requirements, and hours of operation. The organizations listed in our Resources section offer I&R as part of their services. FCA’s Family Care Navigator (www.caregiver.org/family-care-navigator) provides information on caregiving support services for all 50 states.

Care management services can locate and, if needed, provide hands-on management of services for your loved one. Professional care managers (also called case managers) usually have a background in counseling, social work, or a related healthcare field and are trained to assess your individual situation and to implement and monitor a care plan to meet the needs of your loved one. They work with you, the physician, and patient to identify and arrange services such as transportation, home care, meals, and day care. Additionally, care managers can help determine eligibility for entitlement programs, assist with family meetings, plan for long-term care, and intervene in crisis situations.

If you meet eligibility requirements, it may be possible to obtain free care management services through federal, state, or county programs such as Medicare or Medicaid (MediCal in California). Free or low-cost care consultation sometimes can be found through hospitals, mental health programs, home health agencies, social service agencies (e.g., Catholic Charities, Jewish Family Services, Adult Protective Services) and other health-related programs. In addition, it is possible to hire a private care manager, often called a geriatric care manager, who will typically charge between $75 and $150 per hour.

Legal and financial counseling is often needed when your loved one cannot manage legal and/or financial affairs. Areas of concern to family caregivers include Advance Directives for healthcare decisions, management of assets, public benefits planning and, in some cases, litigation. For individuals aged 60 or over and their caregivers, legal referrals and advice may be obtained from services provided by local Area Agencies on Aging. California residents may be eligible for a legal consultation through a California Caregiver Resource Center.

Another way to locate an attorney is through personal referrals or an attorney referral service. The Bar Association in your community may have a panel that refers callers to lawyers in elderlaw or other specializations. Initial consultations generally include a nominal fee.

Transportation services The Americans with Disabilities Act requires transit agencies to provide curb-to-curb paratransit service to individuals unable to use regular public transportation. Paratransit generally consists of wheelchair-accessible vans or taxis for people with disabilities. Paratransit may be run by private, nonprofit, and/or public organizations and is usually free or low-cost. To find out about paratransit in your community, contact your local Area Agency on Aging. Discounted taxi and ride-sharing services might also be available in your community.

Nutrition programs provide meals—usually lunch—in a group setting. Many churches, synagogues, housing projects, senior centers, community centers, schools, and day programs offer meals and opportunities to socialize as a service to elders in the community for a minimal fee.

For homebound individuals unable to shop for or prepare their own meals, home-delivered meals may be an option. Programs such as Meals on Wheels are offered in most communities, funded partially through government monies or by charitable organizations. The delivery includes a friendly visit and quick safety check for your loved one. Meals may only be delivered on weekdays, so you’ll need to be sure there is adequate food for the weekends. Most groups providing home-delivered meals charge a nominal fee (determined by each individual’s ability to pay) to help cover costs.

Respite care offers relief for family, partners, and friends so they can take a break—a respite—from the demands of providing constant care. Respite care can be crucial in deterring premature institutionalization of the patient and reducing physical and emotional stress for the caregiver. Respite care includes adult day care and home care services (see below), as well as overnight stays in a facility, and can be provided a few hours, a weekend, or even a week. Many caregiver support programs offer respite assistance as part of their services. Some organizations offer volunteer respite workers who provide companionship or protective supervision only. For information on respite care in your community, contact your Area Agency on Aging.

Adult day care offers participants the opportunity to socialize, enjoy peer support, and receive health and social services in a safe, familiar environment. It also provides a break for caregivers responsible for a person who can’t be left alone but who does not require 24-hour nursing care in a residential facility.

Adult day care services may include: care and supervision; small group and individual activities; nutritious meals; transportation; care management; recreation and exercise; nursing care; education; family counseling; dispensing medications; assistance with activities of daily living; and occupational, speech, and physical therapies.

There are two types of adult day care: Adult day care provides social activities, meals, recreation, and some health-related services. Adult day health care offers socializing along with more intensive health and therapeutic services for individuals with more severe medical problems, and those at risk of requiring nursing home care. Adult day care is particularly helpful for caregivers who cannot stay at home all day to provide the care, supervision, and companionship needed by a loved one. Although programs vary, participants ordinarily attend several hours a day, up to five days a week. The National Adult Day Services Association and your local Area Agency on Aging can help you find adult day care services. If eligibility requirements are met, Medicaid may help cover fees for adult day health services.

Home care combines health care and supportive services to help homebound sick or disabled persons continue living at home as independently as possible. The hours, types of services, and level of care provided are determined by the health and needs of the care recipient and the caregiver; physician approval may be needed. Aides can be hired directly or through a staffing agency.

There are two types of home care available to you: home health care services and non-medical home care services. Home health care services provide a wide range of medical services, including medication assistance, nursing services, and physical therapy. Nonmedical home care services include companionship, housekeeping, cooking, and many other household activities and chores.

The cost of home care depends on the level of care needed—a nonmedical home care attendant will charge less than a nurse who is monitoring the person’s medical needs and condition. Fees vary, so you might want to shop around. Medicare, Medicaid (MediCal in California), and some private insurance or long-term care policies pay for limited home health care with certain restrictions. In other cases, you may have to pay out of pocket. Nonmedical home care aides can be located through personal referrals or a private home care agency, hospital, social service agency, public health department, or other community organizations. In some areas nursing schools may be of assistance. For information on home care in your community, contact your local Area Agency on Aging.

Hospice care offers special services to improve the quality of life for terminally ill persons by controlling the symptoms of the illness and restoring dignity for the person until death. A team of professionals and volunteers work collaboratively with the patient and family to meet physical, psychological, social, and spiritual needs. They provide medical and nursing care, social services, dietary consultation, counseling, and emotional support to both the patient and the caregiver. Equipment such as hospital beds and wheelchairs is also provided.

Individuals receive ongoing scheduled visits as well as round-the-clock care when needed. Intrusive or “heroic” medical interventions are usually waived, depending on the patient’s wishes, and relief of severe pain is a common goal. Support to surviving loved ones usually continues during the bereavement period. Insurance coverage for hospice care is available through Medicare, Medicaid, and most private insurance plans. For information on hospice care, contact the National Hospice and Palliative Care Organization.

Caregiver support groups bring together friends and family members who meet regularly to share information and discuss practical solutions to common problems. They are a good source of information on available resources. Support groups also provide caregivers with the opportunity to give and receive encouragement, understanding, and support from others who have similar concerns. Interacting with other caregivers can be a real help in reducing stress. Support groups can be found through hospitals, mental health programs, and support organizations (e.g., your local Caregiver Resource Center or Alzheimer’s Association chapter). Support groups for people with early Alzheimer’s disease or other disorders are also offered in some communities. Online support groups are available to caregivers with computer access. Family Caregiver Alliance offers three online groups.

Employee assistance programs are a benefit that your workplace may or may not offer. Types of assistance vary widely, and are available more frequently at larger companies. Programs generally provide employees with counseling for personal issues such as depression, stress, addiction, financial crisis, and illness or death in the family. Some programs may also assist with locating eldercare and childcare resources. Paid or unpaid leave from your job may also be available for caregivers through federal, state, and/or employer-provided programs. Ask your human resources department for information.

Contacting Programs and Care Services

Once you have assessed your needs and identified the types of resources available in your community, you can begin contacting community care services. Be aware that it can be a time-consuming experience to locate and arrange appropriate services. You may need to make a series of phone calls or go through a maze of referrals before you find the right program or person to help you. If you have a care manager or other health care provider who helped assess your needs, he or she should be able to help—it’s a care manager’s job to help you find resources, so don’t be afraid to ask for assistance.

The following suggestions will help guide you through the process:

  • Begin looking for resources before your situation becomes overwhelming. By planning ahead and anticipating certain needs, you can avoid having to make important decisions during a crisis.
  • Write down all information you are given. Be sure to document the date and name of each agency you called, phone number or website, who you spoke with, which services you requested, and any agreed-upon decisions.
  • When you make your call, be prepared with specific information, such as physician’s name, diagnostic information, insurance coverage and Medicare, Medicaid (MediCal in California) and Social Security numbers. Be prepared to answer questions such as “What type of care is the patient currently receiving and who is providing it?” and “Is there any special equipment in the home to assist with patient care?”
  • When dealing with agencies, be assertive and specific about your needs.
  • Mornings are usually the best time to call.
  • Don’t hang up until you understand the follow-up procedures and next steps.
  • Be aware that you might be placed on a waiting list. The demand for existing dementia-related services, in particular, has increased while the funding for some service programs has decreased. If you can anticipate your needs and the needs of your loved one, you’ll minimize the length of this waiting period.
  • If a fee is charged for the service, be sure to ask for a rate sheet that documents the service provided for each fee.
  • “Free” online referral services, especially for senior housing, may only promote those facilities that pay for a listing or placement fee. The listing or recommendation is not an indication of the quality of care provided.
  • Don’t hesitate to ask for help. The purpose of most community agencies is to provide services to individuals who need help. You are entitled to these services since many of them are paid for by your taxes, contributions, or fees for service.
  • Keep in mind that not everyone is familiar with the needs of caregivers. Therefore, many professionals remain uninformed about stresses on you and your loved one. You might find yourself in situations where you need to educate professionals in the community before you can obtain services successfully.
  • Don’t give up!

Resources

Family Caregiver Alliance
National Center on Caregiving

(415) 434-3388 (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org (link sends e-mail)
FCA CareJourney: www.caregiver.org/carejourney
Family Care Navigator: www.caregiver.org/family-care-navigator

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s, and other debilitating health conditions that strike adults.

FCA Fact and Tip Sheets

A listing of all facts and tips is available online at www.caregiver.org/fact-sheets.

Holding a Family Meeting
Hiring In-Home Help
Residential Care Options
Making End-of-Life Decisions: What Are Your Important Papers?
Understanding Palliative/Supportive Care: What Every Caregiver Should Know

Other Organizations and Links

General resources for seniors and caregivers

Aging Life Care Association
(formerly the National Association of Professional GeriatricCare Managers)
www.aginglifecare.org (link is external)

Eldercare Locator
www.eldercare.gov (link is external)

Medicare and Medicaid (MediCal in California)
www.cms.gov (link is external)

Meals on Wheels America
www.mealsonwheelsamerica.org (link is external)

Additional support

National Adult Day Services Association
www.nadsa.org (link is external)

National Hospice and Palliative Care Organization
www.nhpco.org (link is external)
Offers information for families and caregivers through the website caringinfo.org (link is external), including downloadable Advance Directives for every state

National Volunteer Caregiving Network
www.nvcnetwork.org (link is external)

Visiting Nurses Association of America
www.vnaa.org (link is external)

Recommended Reading

FCA participates in the Amazon Smile program. Amazon will donate a portion of your purchase to FCA. You can support FCA by visiting smile.amazon.com/ch/94-2687079 before your purchase.

The Caregiver Helpbook: Powerful Tools for Caregiving, Vikki L. Schmall, Marilyn Cleland, and Marilynn Sturdevant (3rd Edition). Available in Spanish. www.powerfultoolsforcaregivers.org (link is external)

The 36 Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss, Nancy Mace and Peter Rabins, Sixth Edition (2017). Available in paperback.

The Complete Eldercare Planner, Revised and Updated Edition: Where to Start, Which Questions to Ask, and How to Find Help, Joy Loverde (2009). Available in paperback.

Citation

https://www.caregiver.org/caregiving-home-guide-community-resources

This fact sheet was prepared by Family Caregiver Alliance. © 2002, 2016, 2017 Family Caregiver Alliance. All rights reserved.

 

Sharing Caregiving Responsibilities

(National Institute on Aging) Caring for an older family member often requires teamwork. While one sibling might be local and take on most of the everyday caregiving responsibilities, a long-distance caregiver can also have an important role.

As a long-distance caregiver, you can provide important respite to the primary caregiver and support to the aging family member.

Talk About Caregiving Responsibilities

First, try to define the caregiving responsibilities. You could start by setting up a family meeting and, if it makes sense, include the care recipient in the discussion. This is best done when there is not an emergency. A calm conversation about what kind of care is wanted and needed now, and what might be needed in the future, can help avoid a lot of confusion.

Decide who will be responsible for which tasks. Many families find the best first step is to name a primary caregiver, even if one is not needed immediately. That way the primary caregiver can step in if there is a crisis.

Agree in advance how each of your efforts can complement one another so that you can be an effective team. Ideally, each of you will be able to take on tasks best suited to your skills or interests.

Splitting Caregiving Responsibilities—Consider Your Strengths

When thinking about who should be responsible for what, start with your strengths. Consider what you are particularly good at and how those skills might help in the current situation:

  • Are you good at finding information, keeping people up-to-date on changing conditions, and offering cheer, whether on the phone or with a computer?
  • Are you good at supervising and leading others?
  • Are you comfortable speaking with medical staff and interpreting what they say to others?
  • Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
  • Are you the one in the family who can fix anything, while no one else knows the difference between pliers and a wrench?

Splitting Caregiving Responsibilities—Consider Your Limits

When thinking about who should be responsible for what, consider your limits. Ask yourself the following:

  • How often, both mentally and financially, can you afford to travel?
  • Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—taking care of your parent instead of your parent taking care of you? Can you continue to respect your parent’s independence?
  • Can you be both calm and assertive when communicating from a distance?
  • How will your decision to take on caregiving responsibilities affect your work and home life?

Be realistic about how much you can do and what you are willing to do. Think about your schedule and how it might be adapted to give respite to a primary caregiver. For example, you might try to coordinate holiday and vacation times. Remember that over time, responsibilities may need to be revised to reflect changes in the situation, your care recipient’s needs, and each family member’s abilities and limitations.

Supporting a Local Caregiver from Far Away

A spouse or the sibling who lives closest to an aging parent often becomes the primary caregiver. Long-distance caregivers can help by providing emotional support and occasional respite to the primary caregiver. Ask the primary caregiver what you can do to help. Staying in contact with your parents by phone or email might also take some pressure off your parent or sibling. Just listening may not sound like much help, but often it is.

Long-distance caregivers can also play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating care in an assisted living facility or nursing home (also known as a skilled nursing facility).

Long-distance caregivers may find they can be helpful by handling things online—for example, researching health problems or medicines, paying bills, or keeping family and friends updated. Some long-distance caregivers help a parent pay for care; others step in to manage finances.

Helping a Parent Who Is the Primary Caregiver

A primary caregiver—especially a spouse—may be hesitant to ask for help or a break. Be sure to acknowledge how important the caregiver has been for the care recipient. Also, discuss the physical and emotional effects caregiving can have on people. Although caregiving can be satisfying, it also can be very hard work.

Offer to arrange for respite care. Respite care will give your parent a break from caregiving responsibilities. It can be arranged for just an afternoon or for several days. Care can be provided in the family home, through an adult day services program, or at a skilled nursing facility.

The ARCH National Respite Locator Service can help you find services in your parents’ community. You might suggest contacting the Well Spouse Association . It offers support to the wives, husbands, and partners of chronically ill or disabled people and has a nationwide listing of local support groups.

Your parents may need more help from home-based care to continue to live in their own home. Some people find it hard to have paid caregivers in the house, but most also say that the assistance is invaluable. If the primary caregiver is reluctant, point out that with an in-home aide, she may have more energy to devote to caregiving and some time for herself. Suggest she try it for a short time, and then decide.

In time, the person receiving care may have to move to assisted living or a nursing home. If that happens, the primary caregiver will need your support. You can help select a facility. The primary caregiver may need help adjusting to the person’s absence or to living alone at home. Just listening may not sound like much help, but often it is.

For More Information About Caregiving

National Respite Locator Service
www.archrespite.org/respitelocator

Well Spouse Association
1-800-838-0879 (toll-free)
info@wellspouse.org
www.wellspouse.org

Aging Life Care Association
1-520-881-8008
www.aginglifecare.org

Caregiver Action Network
1-202-454-3970
info@caregiveraction.org
www.caregiveraction.org

Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov

Family Caregiver Alliance
1-800-445-8106 (toll-free)
info@caregiver.org
www.caregiver.org

Citation

https://www.nia.nih.gov/health/sharing-caregiving-responsibilities

 

Elder Orphans: How to Plan for Aging without a Family Caregiver

(AARP) When you can’t lean on family and friends to help take care of you, here’s what you can do.

Carol Marak was a caregiver for both her parents: Her mom had congestive heart failure and her dad had Parkinson’s disease. After they died and she turned 60, she says,

“It occurred to me … oh, my goodness, I am not married. I do not have children. Who is going to do that for me?”

Marak, 65, of Waco, Texas, is considered an “elder orphan” — someone who is aging alone with no family available to address their caregiving needs. More than 1 in 5 Americans older than 65 are — or are at risk of becoming — elder orphans. And 23 percent of boomers will eventually be without family caretakers, according to Maria Torroella Carney, who has studied the issue and is chief of geriatric and palliative medicine at Northwell Health of Great Neck, N.Y.

And those figures don’t include the countless parents whose adult children are not available or able, for various reasons, to assist them.

The American Geriatrics Society recently developed guidelines for how public policy and the health care industry might assist elder orphans. (The authors refer to them as “unbefriended” older adults.) Experts warn of a potential crisis as the population ages and even fewer family caregivers are available for each person.

A 2015 AARP Public Policy report titled “Valuing the Invaluable” concluded that while there were 7.2 potential family caregivers for every person 80 and older in 2010, that ratio is likely to fall to 4 to 1 by 2030, and could sink to 3 to 1 by 2050.

But even with already high numbers of elder orphans set to skyrocket, there’s still a widely held assumption in the health care industry that everyone has a family caregiver in the wings.

“When you go in for a colonoscopy, they won’t even do the procedure if you don’t have someone to take you home,” Marak points out.

“Everyone thinks we all have family. Well, we don’t.”

Here are some tips for planning ahead if you don’t have a family caregiver.

Consider where — and how — you might like to age. While you’re still healthy, evaluate your living situation and try to make a plan.

“Identify where the best place is for you to live,” Carney says.

“Should you move to an area that’s more walkable, or has mass transportation or access to taxis?”

You might also consider communal living options, such as taking on roommates, or moving to a senior community or assisted living facility — often an ideal option for some who can afford it.

Get your paperwork in order. Make all legal documents accessible and your intentions clear. That includes deciding upon a health and financial proxy: Who’s going to make crucial decisions for you if you become incapacitated? If you don’t have anyone in your personal life to fill that role, you might look into elder care resources in your region. Or your doctor may be willing to step in, Carney says.

“I’ve had patients who’ve had no one and have asked me or my colleague to be their health care proxy,” she adds.

(If a physician agrees to be your proxy, he or she can’t continue as your health care provider.) You might consult an elder care lawyer to discuss your situation and help you plan.

Develop a social network. You may not be able to rely on friends for serious, long-term care, but they can help you — and you them — in many ways, such as bringing meals when you’re ill or recovering, and doing errands such as picking up prescriptions or groceries. Sometimes it’s hard to make new friends late in life, and old ones may not live nearby or are caught up in their own health issues. Consider joining clubs, taking a class, volunteering — anything that will offer you repeated exposure to a new group of people.

Find support from like-minded people. Marak started a Facebook group for elder orphans in February 2016 so

“people have a place just to feel like they’re not alone, so they can identify with others.”

Think creatively. Among other possible ways to plan for a future without a family caregiver, Marak has considered adopting a family. They’d agree to care for her, and she’d bequeath her assets to them. Other innovative ideas, Marak says, include joining other elder orphans in a living situation with space for a live-in caregiver

“so the residents, as they age, can count on this caregiver to help them at home. They provide the space for the person to live, and that person provides the services they need.”

If you have ideas for how elder orphans might prepare for aging without a family caregiver, join the conversation at AARP’s online community.

Citation

http://www.aarp.org/home-family/caregiving/info-2016/caregiving-tips-when-aging-alone.html?intcmp=CRC-FEED

Christina Ianzito is a features editor at AARP Media.

Copyright 2016 AARP

 

“Aging in Place”— Weighing Caregiver Options

(BrightFocus Foundation) Many older adults wish to remain in their home of choice as long as possible. Here are three important elements to consider that can help you successfully “age in place.”

When it comes to aging in place in one’s own home versus aging elsewhere, such as an assisted living facility, older adults—no matter what their condition—almost always want to remain at home. It is comfortable. It is familiar. It is home.

For someone with Alzheimer’s or other forms of dementia, aging in place is a viable alternative to living in a facility, and it comes with many considerations.  What can a family do to make aging in place a reality for their loved one with Alzheimer’s or dementia? Below we look at three overall elements—caregiving, safety, and health and well-being, to successfully age in place at home.

Caregiving

To provide caregiving for one with Alzheimer’s or dementia, families have multiple options:

  • Family Caregivers: If a family is considering the option of being the in-home caregiver(s) for one with Alzheimer’s or dementia, it can mean reducing one’s work schedule, taking a leave of absence from work, or quitting one’s job. Leaving one’s job means loss of income, benefits, and professional status.
  • Private Caregivers: In the absence of available family caregivers, privately hired caregivers, available through an agency or by contracting directly with a caregiver, are options. Private duty caregivers are either Certified Nursing Assistants or Home Health Aides.
  • A Combination of Family Caregivers and Private Caregivers: this combination can work well for many, especially when family wants to be helping in the home and involved, but cannot do so on a full time basis. The professional caregivers might cover the weekdays, and the family caregivers the evenings and weekends.
  • Local Senior Centers or Adult Day Care Centers: Enrolling your loved one in a program at the local senior center or Adult Day Center is another option. Senior Centers and Adult Day Centers are available in many communities throughout the U.S. Contact your local Area Agency on Aging to learn the local options.

Over the course of your loved one’s aging process, any or all of these options might be used. Because of this, if a family has privately hired caregivers, it can also be wise to maintain a relationship with a local agency, as one just may be needed in a pinch, or to cover caregiver vacations.

How Does the Caregiver Get Paid?
With agency-provided caregiving, payroll and benefits are managed by the agency. With this arrangement, the family pays the agency each pay period. When a family hires a caregiver privately, the family becomes the employer and manages the payroll and benefits.

Additional caregiving information is available at the Home Care Association of America website at http://www.hcaoa.org/.

Safety: A Top Priority

No matter where one lives, safety must be a priority. For a person with Alzheimer’s or other dementia, it will mean different things at different times in the progression of the disease, but it should include the following:

  • Proper indoor and outdoor lighting, locks on doors, area rugs pulled up or taped down, and a clutter-free environment.
  • A kitchen that is safe: the stove and oven knobs are covered to eliminate risk of turning the stove or oven on, sharp kitchen utensils are hidden and/or locked out of sight.
  • The water heater set to a temperature no greater than 120 degrees, an emergency response system if still appropriate for your loved one’s ability, and use of a monitor to hear when he/she gets up during the night.
  • A dementia friendly bathroom: a walk-in shower or bath, grab bars, a shower seat, and a hand shower.
  • When and if the need comes, having a person to contact to install a ramp for wheelchair access.

For more detailed information regarding safety in the home, see our article on making your home dementia friendly.

Health and Well-Being

Health and well-being includes:

  • Consistent medical care with primary care and specialists needed to manage your loved one’s care.
  • Medication management and administration when your loved one can no longer safely manage them independently.
  • Daily exercise—walking, gardening, dancing, tai chi, strength training, and stretching, to name a few.
  • A comfortable bed at a safe height, or a hospital bed if one is more appropriate for their needs; comfortable clothing; and a favorite item that is soothing and relaxing.
  • Socialization—including family gatherings; a few days each week at the senior center; church services; an art class; and other activities and settings your loved one enjoys. Create social events at home with family and friends, and encourage your loved one’s participation in the events. Provide help when they need it.

And You?

Finally, and every bit as important, is to remember that as a caregiver you will need respite—a break from being a caregiver. It is so important, and with it, you are likely to be a better caregiver, and a better you.

Citation

http://www.brightfocus.org/alzheimers/article/aging-in-place-weighing-caregiver-options

By Kathleen Allen, LCSW, C-ASWCM
Senior Care Management Services, LLC

Copyright 2016 BrightFocus Foundation. All rights reserved.

 

Essential Resources for Senior Citizens and Their Caregivers

(Eldercare Directory) Every state has an Aging Services Division dedicated to providing frail seniors with home and community-based services, so that they can continue living in their own homes, instead of having to enter a nursing home.

A wide range of state assistance programs are generally available to eligible seniors, including home health aides and skilled nursing care, home-delivered meals, help with household chores, transportation to shopping and medical appointments, as well as counseling, advocacy and legal aid.

In addition to these programs that help senior citizens directly, many states also offer caregiver assistance programs that provide family caregivers with information, counseling, and respite services.

Long Term Care Ombudsman

The long-term care ombudsman is a statewide office that was created under the authority of the Older Americans Act. The office of the ombudsman has the responsibility and authority to investigate and resolve complaints from seniors and their family members regarding the quality of care in long-term care facilities, including nursing homes, assisted living facilities, board and care homes, and specialty care facilities, such as dementia day care programs.

Agents from the ombudsman’s office work as advocates for elderly residents, in response to individual complaints, to ensure that residents receive quality care, that their rights are respected, and that they are treated fairly by the long-term care facility, its providers, and staff.

The ombudsman’s office is also available to assist seniors and their family members in their dealings with other government agencies, to ensure that elderly patients and residents receive all of the medical, rehabilitation, legal, financial, and social services that they are entitled to by law.

Food and Nutrition Programs

Congregate and Home Delivered Meals

Eligible seniors can receive free nutritious meals, which are professionally prepared and served daily in congregate settings, such as senior and community centers. Most communities also have programs, such as Meals on Wheels, that offer seniors the option to have meals delivered to them every day in their own home.

Nutrition Counseling

Many local agencies for the aging offer seniors and caregivers nutrition counseling services, to help them make healthy meal choices, and can give advice and recommendations for dealing with the nutritional aspects of various illnesses.

Supplemental Nutrition Assistance Program (SNAP)

The Supplemental Nutrition Assistance Program (SNAP), formerly known as Food Stamps, is a federal program that provides monthly financial assistance to eligible individuals, including the elderly and disabled, who have low income and limited assets and need help paying for food. Although this is a federal program, it is administered at the state level, so you should contact your state’s Agency on Aging to apply for help through this program.

»Read more details about the SNAP program, including income and asset limits, in our article on Federal Programs for Seniors.

Caregiver Assistance Services

The overwhelming majority of in-home care services for the elderly is provided by unpaid family caregivers who give freely of themselves and make it possible for their elderly loved ones to live at home in a family setting for as long as possible.

Family caregivers of the elderly can now get help and support through several programs designed specifically to address their needs.

Caregiver Respite

Most states have some type of caregiver respite program which provides family caregivers with temporary relief from their care giving responsibilities. Through the respite program, caregivers can arrange to have a substitute caregiver come in to their home and provide care to their elderly family member, or the elderly care recipient could be temporarily cared for in an alternative residential care setting, such as a nearby adult care home.

Caregiver Counseling

Caregiver counseling services offered through the state and local agencies on aging provide caregivers with information on how to access government program and services for the elderly, assist the elderly and their caregivers with applying for benefits, and offer guidance and information to enable seniors and their caregivers to make informed decisions about their elder care options.

Medicaid Waiver

Through the Medicaid Waiver program, eligible seniors who require a level of care that would ordinarily require admission into a nursing home can receive in-home care services paid for by Medicaid. The goal of the program is to prevent or delay nursing home admission, and provide frail seniors with the necessary medical and support services to enable them to continue living at home with their families safely and comfortably, for as long as possible.

Adult Protective Services and Elder Abuse Prevention

The division of adult protective services is responsible for investigating allegations of abuse or neglect of vulnerable adults, including the frail or disabled elderly and adults with emotional or mental disabilities as a result of an illness or injury. Suspected cases of neglect or abuse of a vulnerable adult, such as physical abuse, sexual abuse, financial abuse or exploitation, whether in a domestic or institutional setting, should be reported to the state’s division of adult protective services.

Legal Aid

The legal aid program for seniors is administered through state or local agencies on aging. Through the program, qualified attorneys answer seniors’ legal questions, provide legal advice and advocacy, prepare and review legal documents, and represent seniors in legal proceedings.

State Health Insurance Assistance Program (SHIP)

Seniors can contact their State Health Insurance Assistance Program (SHIP) to speak with trained insurance counselors who can provide accurate and objective information and guidance regarding the public and private health insurance options available for the elderly in their state, including Medicare and Medicaid benefits, Medicare Advantage and Supplement Plans, and also state-sponsored prescription assistance programs for the elderly.

»Learn more about Medicare and Medicare Advantage Plans.

Senior Companion and Friendly Visitor Programs

These programs provide seniors with a chance for social interaction with a volunteer, usually another senior citizen, who comes to visit the senior and engage in conversation, or perhaps to read to a visually impaired senior. Volunteers may also take seniors out for recreational activities or help with some light chores around the home. These volunteers can play an important role to help prevent social isolation, and can also watch for signs that the senior is developing a new or worsening health condition that requires medical care.

Chore and Homemaker Assistance

Seniors can apply through their local agency on aging to receive help with their routine household chores, such as shopping, doing laundry, general house cleaning, preparing meals, and yard work such as mowing grass, raking leaves, pulling weeds, and clearing snow.

Transportation Service

In most communities, seniors can call their local office for the aging to arrange for transportation to and from medical appointments, shopping centers, and other locations as required to manage their personal affairs. Seniors who use a wheelchair or have other mobility impairments should call well in advance of their scheduled appointment, to ensure the availability of handicapped-accessible transportation.

Self-Directed Care Options

An increasing number of states are offering seniors the ability to participate in self-directed care programs, which offer seniors a fixed monthly cash benefit that they can use as they see fit, to purchase personal care items for their comfort or convenience, or to pay for services from home and community-based care providers that they choose.

When properly implemented, these programs give seniors greater control over their own care and finances, thus promoting independence and self-determination.

Senior Employment

Seniors who wish to supplement their retirement income and provide useful services to their community may be able to participate in state sponsored senior employment programs. These programs are primarily directed at low-income seniors and offer job training, employment counseling, and job placement services, with many seniors placed in non-subsidized positions working for community service agencies.

Prescription Assistance Program

Most states have some form of prescription assistance program to help low income elderly and disabled residents pay for their prescription medications. The details of these programs vary from one state to another, but in most cases they provide comprehensive prescription drug coverage for seniors without other prescription insurance coverage, and also supplement the coverage and reduce the out-of-pocket expenses for eligible seniors who have coverage through a Medicare Drug Plan.

Senior Housing Assistance

A variety of government housing assistance programs are available to help seniors with their housing needs. The majority of these programs are sponsored by the federal government, however they are administered through the state and local agencies on aging.

Senior Housing Apartments

Many communities use federal funds to maintain a stock of public housing apartments for low income senior citizens and persons with disabilities. The demand for these senior apartments is very great, and there is usually a waiting list for available apartments. You should contact your state Agency on Aging, listed below, for information about the eligibility requirements and instructions on how to apply for a senior apartment in your area.

Section 8 Housing

Section 8 housing is a federal program administered by the states, which provides a rent subsidy to eligible seniors to allow them to rent a home or apartment from a private homeowner.

»Read more about the Section 8 Program in our article on Federal Programs for Seniors.

Home Repair and Modification Assistance

Various types of financial aid, ranging from grants that do not have to be repaid, to low interest loans, are available to eligible seniors who need help paying for necessary home repairs, or who need to make modifications to their home in order to make it handicapped-accessible.

Demand for home repair and modification grants is high, and funds are very limited, so you should apply as soon as possible when the yearly application period opens in your area.

Heating and Energy Assistance

The federal government makes funds available to the states to help low income seniors pay for a portion of their winter heating and summer cooling costs. Although this is a federal program, it is supervised at the state level, and usually administered at the county or local level. The income limit for receiving energy assistance varies from state to state, based on state median income and the federal poverty level, and also depends upon your family size.

Contact your state agency on aging listed below for information about how to apply for this program.

Program of All Inclusive Care for the Elderly (PACE)

The Program of All Inclusive Care for the Elderly (PACE) is a special program, available in just 28 states, which offers integrated Medicare and Medicaid benefits and provides medical, social, and long-term care services to the frail elderly, in order to improve their quality of life and ensure that they have the professional support and care that they need, in order to remain in the community and in their homes for as long as possible.

Burial Assistance

Many states offer a small amount of financial assistance to help families pay for the funeral, cremation, and/or burial costs of deceased seniors who were receiving certain low-income benefits, such as SSI or Medicaid, at the time of their death, and whose estate is insufficient to pay for their final expenses. If the deceased has living relatives who were legally responsible for their support while they were alive, then the legally responsible relatives must also lack sufficient resources in order to qualify for burial assistance.

State Agencies for the Aging

The following table provides links to every state’s Aging Services Division, where you can find complete details about your state’s aging assistance programs, including eligibility requirements and application procedures.

Citation

https://www.eldercaredirectory.org/state-resources.htm

Copyright © 2007-2014 EldercareDirectory.org

 

Alzheimer’s Disease: Anticipating End-of-Life Needs

(Mayo Clinic) As an Alzheimer’s caregiver, you might be your loved one’s most powerful voice. Make decisions that ensure dignity and comfort for your loved one.

In the early stages of Alzheimer’s disease, caregivers often focus on keeping loved ones safe and comfortable. As the disease progresses, however, you might face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care for your loved one? When does medical care merely prolong a person’s dying? Here’s help considering these and other end-of-life questions.

Create Advance Directives

Advance directives are written instructions regarding your loved one’s preferences for medical care at the end of life. Ideally, discuss these preferences in the early stages of the disease with your loved one. Later, make sure copies of advance directives are included in your loved one’s medical charts. This is important if your loved one moves to a nursing home or other facility for long-term care or needs care in a hospital or emergency room. The advance directives will help the staff know what is — and isn’t — to be done in medical emergencies.

Focus on Comfort, Not Life Extension

As Alzheimer’s progresses, your loved one might not be able to communicate that he or she is in pain. Look for clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs might include sores, swelling, and feverish or pale skin. Speak to the medical team about adjusting your loved one’s treatment plan to ensure his or her comfort.

Eventually, you might need to weigh your loved one’s comfort against the benefits of prolonged life. In some cases, efforts to prolong life — such as dialysis, tube feeding and antibiotics to treat bacterial infections — might result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.

Consider Hospice or Palliative Care

Hospice care focuses on pain management and comfort care at the end of life. Hospice care is typically reserved for people who have less than six months to live. Because this time frame can be difficult to predict in end-stage Alzheimer’s, hospice care is generally considered appropriate when a person who has end-stage Alzheimer’s:

  • Has lost the ability to communicate
  • Can no longer walk
  • Is experiencing urinary and fecal incontinence
  • Has at least one dementia-related medical complication, such as aspiration pneumonia, infection or weight loss

Hospice care can be provided anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.

Palliative care — which aims to improve quality of life for people who have advanced illnesses — also might be appropriate. Unlike hospice care, palliative care is available at any time during a serious or life-threatening illness. It’s offered in conjunction with other medical treatment and is meant to help ease symptoms, relieve pain, address spiritual and psychological concerns, and maintain dignity and comfort.

Connect Through the Senses

Even if your loved one doesn’t recognize you or can’t communicate verbally, you can still show reassurance and love. To maintain a connection, use your loved one’s senses:

  • Touch. Hold your loved one’s hand. Brush his or her hair. Gently massage your loved one’s hands, legs or feet.
  • Smell. The scent of a favorite perfume, flower or food might be comforting.
  • Sight. Show your loved one a video with scenes of nature and soft, calming sounds. Or take him or her to look at a garden or watch the birds.
  • Hearing. Read aloud, even if your loved one can’t understand the words. The tone and rhythm of your voice might be soothing.

Dying with Dignity

Helping someone who has Alzheimer’s through the last years of life is a difficult journey. As the disease progresses, you’ll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life.

Citation

http://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20044065?pg=1

© 1998-2017 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.

 

‘Making the Best of It’: Families Face the Heavy Burden of Alzheimer’s

(HealthDay News) For Marilyn and Tom Oestreicher, their golden years were within reach.

After more than four decades of marriage, the Illinois couple had fashioned a comfortable daily routine. The parents of two grown children, she was a bank teller, while he was a school teacher and a published Civil War scholar.

But in 2013, Tom was diagnosed with Alzheimer’s at the age of 65. And all of their plans were thrown into disarray.

“It’s certainly not how we saw the end of our journey,” admits Marilyn.

“My grandma died at 93 with dementia. And my mom has it now at 93. But it’s a whole different ballgame when it’s your spouse. You just have to go forward and do what you can do.”

For Marilyn, that meant coming to terms with her new and often daunting role as the caregiver for a loved one struck by progressive dementia.

She has plenty of company.

“When you look at Alzheimer’s statistics, we know that there are now more than 5 million Americans being cared for by 15 million unpaid caregivers,” said Monica Moreno, national director of the Alzheimer’s Association’s division of Early Stage Initiatives and E-Services.

Absent new treatments for a disease with no known cure, those figures will likely triple by the middle of the century, Moreno added.

“Which means that an escalating number of families are going to be facing the challenges of caregiving for a devastating disease,” she noted.

“So, what we want to do is make sure that we understand exactly what these challenges are, so we can make sure that there are programs and support services in place that can help them through every step of this disease.”

Gauging the Burden

To that end, the Alzheimer’s Association has just completed a new survey that asked more than 1,500 adults to share their fears and concerns about getting older, getting sick and/or caring for a family member struggling with dementia.

Roughly 70 percent of non-caregivers said they are afraid of ultimately becoming a burden to their spouse, partner or children. A similar number said they feared becoming unable to support and care for themselves.

That might explain why nearly 60 percent of non-caregivers said they were specifically afraid of getting Alzheimer’s, more than the 46 percent who said they were afraid of simply dying.

Still, the vast majority (85 percent) said they would want their spouse or partner to be their main caregiver if the need arose. Nearly three-quarters said they would want professional caregivers, exceeding the roughly two-thirds who said they would want their children to shoulder that responsibility.

Among people already caring for someone with Alzheimer’s, nine in 10 cited emotional stress as the biggest challenge, while about 80 percent said physical stress and time management were big problems. Nearly 70 percent felt financial strains, and about two-thirds said they felt ill-informed about the disease.

And while eight in 10 caregivers agreed that it ideally “takes a village” to care for someone with Alzheimer’s or dementia, more than 80 percent said they had insufficient help from other family members. Almost two-thirds of caregivers said they felt isolated or alone, and roughly half said they had no one with whom to discuss their hardships.

Caregiving a Lonely Business

“Part of it is that people don’t understand,” explained Marilyn.

“Not your girlfriends, not your sisters. Nobody. And really, if they’re not going through it themselves they can’t understand, or they don’t want to because they don’t want to think it can happen to them,” she added.

“In fact, some caregivers end up totally losing touch with family or friends, almost out of a fear that they can catch this themselves. Now, we haven’t had that happen. But we have very, very good friends,” she said.

Marilyn has also found solace in an Alzheimer’s support group, a regular caregiver gathering that she describes as a “sisterhood.”

“These are people who are dealing with this day to day,” she said.

“They understand the struggle. I’m not, but some are on meds because of depression, or to help them sleep, or to help them keep going. And that’s something you can talk about. You can talk about anything with them, because they’re going through the same thing. You get information, and you get support. And that helps you to understand that there is life after a diagnosis.”

The ‘Unsung Heroes’

Alzheimer’s patient Mike Belleville, a Massachusetts resident, couldn’t agree more. Caregivers are “the unsung heroes of this whole thing,” he stressed.

“People with dementia are losing a piece of ourselves and our identity every day. But the people who care for us are also losing a piece of their identity every day as well. And that’s not recognized enough. So ‘caregiver,’ for me, doesn’t even [express] enough respect for what they do,” added Mike, who was diagnosed with Alzheimer’s in 2014 at the age of 52.

Instead, he calls his wife his “life-giver,” pointing out that it was she who took the first critical steps to get him back on his feet after his diagnosis.

“We were stunned,” Mike recalled.

“I was a telecommunications technician for Verizon for almost 20 years, which was a pretty demanding job. But when I started to forget things I had trained others to do — when I would start getting lost coming home from work — we went to see a doctor,” he said.

“But it was a complete shock to us. We didn’t even know you could get it when you’re that young. We had no idea what to do. We were clueless,” Mike explained.

“I had been a very active person. But, to be honest, I went into a deep depression for the first five to six months.”

It was his wife who finally reached out to the Alzheimer’s Association, beginning the process of “getting educated about the disease,” he added.

“So, now we’re plugged in,” Mike said.

“We understand what’s going on. And we don’t feel like we’re trying to do this all on our own. And I’m retired, and I can still function pretty well. But my wife now has all the stress of managing all the finances. And caring for our 19-year-old son, who has Asperger’s. And still working a full-time job. And taking care of me. And we’re the lucky ones,” he chuckled.

‘We Have Our Children and Friends Who Pitch In’

Marilyn considers herself lucky as well. With great difficulty, Tom was able to slog through a final year of work, post-diagnosis, to secure his pension. She was able to retire with social security and Medicare in place. “If we had been younger, it would’ve been a big problem. But we’re fortunate,” she said.

“Of course, it can still be really tough,” she added, noting that hired help is likely not in the offing given that Tom had no long-term disability insurance.

That fact places them among an estimated 100 million American workers who have no such coverage, according to Council for Disability Awareness.

“But Tom is still very functional,” Marilyn said.

“And we have our children and friends who pitch in. So, we don’t need help yet. And when we get to the point when we do, we’ll just have to see how that works out. You just have to make the best of it.”

More Information

There’s more on Alzheimer’s and caregiving at the Alzheimer’s Association.

Citation

https://consumer.healthday.com/cognitive-health-information-26/alzheimer-s-news-20/making-the-best-of-it-families-face-the-heavy-burden-of-alzheimer-s-723294.html

SOURCES: Monica Moreno, national director, Early Stage Initiatives & E-Services, Alzheimer’s Association, Chicago; Marilyn Oestreicher, Alzheimer’s caregiver, Genoa, Ill.; Mike Belleville, Alzheimer’s patient, Bellingham, Mass.; June 1, 2017, Alzheimer’s Association Survey

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