Archives for August 2017

Home Away from Home: Relocating Your Parents

(Family Caregiver Alliance) As you’ve watched your parents get older, perhaps you have struggled with situations such as these:

  • You’ve travelled to visit your mother for the holidays, and found her refrigerator nearly empty, her bills unpaid and her house in disarray.
  • A neighbor has called you to report that your father was wandering in the street, unable to find the home he’s lived in for 30 years.
  • Your mother has neglected to take her diabetes medications, severely compromising her health.
  • Your very independent father fell and broke his hip, making it impossible to navigate the stairs in his home.

If there is a decline in cognitive abilities as a result of Alzheimer’s disease or a related dementia, or a shift in a medical condition that requires increased care, there is clear cause to be concerned about your parent’s welfare. It may be time to consider a move to a safer environment.

But where should he or she live? Often your first inclination is to move Mom or Dad into your home—but this major life change deserves thoughtful examination, and there are many alternatives to explore. This Fact Sheet offers advice and summarizes the issues to consider before making the important and challenging decisions regarding relocating your parent.

First Step: Open Discussions

Open and honest discussion with your parent and other family members becomes an essential first step when you are trying to decide if moving your parent to a new living situation is the right thing to do. Family meetings with your parent, spouse, children, siblings and other key people will help everyone share their views and will help you decide how best to proceed. Active communication among all family members is the building block to a strong support system for an older parent and all family members involved.

Although some of these discussions may be very difficult and emotional, several topics require attention. Together, the family—including your parent—will need to talk about:

  • all possible residential options
  • the type of care needed
  • finances
  • each person’s role in the transition
  • changes in lifestyle
  • the location of the new home

Expectations must be defined and clear to everyone involved. The following can help guide your discussions.

The Level of Care Needed

As your parent gets older, his/her care needs will change, and in most cases become more challenging. It’s essential to develop a strategy for providing care, and this requires both practicality and planning. Consulting with a Geriatric Care Manager or social worker may be beneficial as you consider your options and what you will and will not be able to do for your parent.

  • Evaluate whether your parent needs constant supervision or assistance throughout the day and how this might be provided.
  • Determine which activities of daily living (such as eating, bathing, toileting) your parent can do independently.
  • Determine your comfort level for providing personal care such as bathing or changing an adult incontinence pad.
  • Evaluate your own health and physical abilities to help decide if you are able to provide care for your parent.
  • Explore the availability of services such as in-home care, adult day services, meal delivery, a friendly visitor program,
  • Investigate long-term arrangements and options if living with your parent will not work or is not your choice.
  • Determine the type of medical care that will be needed by your parent, and whether appropriate physicians and services—including transportation services—are available in your community.
  • As time goes by, expect changes in your parent’s medical or cognitive condition.

Family Dynamics

Families are rich in historical experiences, and many of your positive and negative feelings about your parents and other family members will play a role in your decision to relocate or live with a parent. Be honest with yourself and do not allow unresolved conflicts or feelings of guilt or obligation pressure you into taking on more than you can manage.

  • Be realistic about the significant life changes that relocating your parent will mean for you, your parent, your siblings, your spouse and children.
  • Try to come to terms with past disagreements between you and your parent.
  • When deciding whether to relocate or move your parent into your home, consider the opinions of your spouse, children, siblings and other family members.
  • Come to an agreement with your siblings regarding how much and what kind of help you can expect to receive from them.
  • Recognize that, despite possible cognitive or physical limitations, that your parent is an adult, is entitled to maintain as much autonomy and dignity as possible, and should be at the center of any decision-making.

Family Caregiver Alliance offers helpful Fact Sheets, Holding a Family Meeting and Caregiving with Your Siblings, providing more in-depth information (see the Resources section at the end of this Fact Sheet).

Living Arrangements and Housing Options

Moving your parent into your home is certainly one option, but you and your family should take some time to consider other living arrangements as well. The type of housing you choose will largely depend on three important factors: your parent’s care needs, finances, and the service and supportive options available in your parent’s or your community.

When deciding where a parent should live, family members need to discuss, understand and accept the benefits and drawbacks of living close to one relative versus another. Often, the choice of location can cause conflict between family members because those living near the parent often bear most of the responsibility for the parent’s care, and may feel that those living further away do not help enough. On the other hand, family members who live far away can feel frustrated that they do not have the opportunity to participate more in providing care. An open dialogue and an agreement on how to share local and long-distance caregiving are essential.

Many residential communities for seniors are owned and operated by faith-based or other organizations with which your parent may feel an affiliation or interest. Ask your parent if they know of any friends who have moved to these new communities, and find out if your parent would be interested in being in the same community. Before any decision is made, visit more than one community with your parent, ask to join the community for lunch and get a facility tour, view the activities schedule and menu, and take particular note of how the staff interacts with the residents. Ask the community employees how they might accommodate your parent’s interests, hobbies and transportation needs. If the community under consideration is a category of licensed facility, ask to view the facility’s compliance history with minimum standards, and the number and types of complaints that may have been filed against the facility.

The following list outlines different types of living arrangements that may be appropriate for your parent. Each community offers different choices. Remember, Medicare does not usually cover these expenses.

Other options . . .

  • Living Independently: Most people prefer to remain in their own homes if possible. Sometimes resources in the community such as meal delivery service, “friendly visitors,” housekeeping, transportation or other in-home assistance provide enough support so your parent can remain at home, in familiar surroundings. Keep in mind, though, that it can be a hard sell for your parent to accept this kind of help if he or she feels you are meddling and the assistance is unneeded. These issues must be addressed in a family meeting. A small apartment, condominium or one-story house in their community or close to you might also be feasible, with help and check-ins from family. Sharing an apartment or house with a friend or relative could be another possibility. There are agencies in some cities that help arrange shared living situations. A newer option, called Naturally Occurring Retirement Communities (NORCs) or Villages, offers members—generally a group of older people whose homes are in close proximity—vetted services such as home repair, transportation and social/educational activities. There is a fee to join and the organization is directed by volunteers and/or paid staff. This is a growing movement across the country, and for some people, this is enough support to allow them to remain in their homes.
  • Retirement Community: Independent retirement communities usually offer individual apartments in a multi-unit setting, with group meals, transportation, housekeeping services and numerous organized social and enrichment activities. Residents are free to come and go as they please and still retain their privacy, yet have the benefits of a larger group setting. Amenities and prices vary from place to place. Some offer access to a nurse or nurse practitioner. As care needs increase, additional services (e.g., help with dressing) often can be added for a fee. Some communities require that new residents be ambulatory (not in a wheelchair) at admission. Some places offer subsidized housing for low-income individuals, with stringent limitations.
  • Residential Care Facility (RCF): These facilities are small group homes (sometimes called board and care homes or adult foster home) that provide supervision, meals and care for people who cannot be left alone but do not require skilled nursing care. Residential care facilities provide assistance with bathing, grooming, eating, using the toilet, and walking, and they also provide socialization and recreational activities. Rooms may be private or shared.
  • Assisted Living Facility (ALF): Individuals who are somewhat independent but require daily oversight and assistance with housekeeping, medication management and personal care will want to consider an assisted living facility. Assisted living facilities offer rooms or apartment-style accommodations and, often, social activities. Meals are provided in a shared dining room. Staff is available to assist with care needs such as bathing, grooming, eating or using the toilet, and care is arranged as needed by the individual. Medical staff may be on-site or on call. The monthly charge for assisted living is determined by how much care a person requires and varies widely throughout the US. Some assisted living facilities are dedicated to—or include a separate wing for—those with Alzheimer’s disease or other memory impairments. These “dementia care” or “memory care” units offer a special security-protected environment, and social and other activities designed for the abilities of the residents.
  • Intermediate Care Facility (ICF): This type of facility provides ’round-the-clock care for those who require help with bathing, grooming, going to the toilet and walking. Individuals in these facilities cannot live independently and require nursing care, although the nursing care is not offered 24 hours a day. Residents generally require a lower level of care than is offered in skilled nursing facilities.
  • Skilled Nursing Facility (SNF): Commonly called nursing homes, these facilities provide nursing services 24 hours a day and are designed to provide high levels of personal and medical care, such as administration of injections, monitoring of blood pressure, managing ventilators and intravenous feedings to individuals who cannot function independently. People living in skilled nursing facilities usually require help with the majority of their self-care needs; it would be very difficult to provide this level of care in a home environment. Medicaid (Medi-Cal in California) may help cover the costs if residents meet specific financial and medical requirements. Medicare may pay for a time-limited stay after hospital discharge, on a doctor’s orders.
  • The Eden (or Greenhouse) Alternative is a program in certain nursing facilities around the country to make the environment more elder-centered and less institutional. These are set up to encourage as much independence and interaction as possible for the residents, and to be more home-like. Contact with plants, animals and children is encouraged.
  • The Program for All Inclusive Care (PACE) is designed for people 55 years or older certified by the state where they reside to be nursing-home-eligible, but who can remain at home with a complement of health and supportive services. Sometimes referred to as a “nursing home without walls” this growing care option is available in many, but not all, parts of the country. Most participants are Medicaid-eligible.
  • Continuing Care Retirement Communities (CCRCs) (sometimes called “Life Care”) offer independent, assisted and skilled nursing facilities all in one location. If a person’s health deteriorates, a disruptive move to a new community is not necessary. These communities often can be quite large and generally require a substantial entrance fee.
  • Veteran’s Communities may be available in your state, and offer multiple levels of care. From independent living with supportive health and social services, to skilled nursing facilities, these communities permit a veteran (or their spouse) to live in the same community.

Regardless of the type of facility you choose, be sure to visit each one. Don’t be shy about asking a lot of questions. A preliminary visit should reveal a facility that is clean, smells pleasant, has staff actively but gently interacting with residents, and in which the residents are satisfied with their “home.”

When Your Parent Moves in with You

Change of Family Roles. If you and your parent decide the best place for your parent is in your home, understand that living with a parent most likely will lead to a shift in family roles. A once-authoritative parent may become more dependent—you may become the guardian who gives direction and controls many aspects of your parent’s life, while trying to preserve as much autonomy as possible for your parent. You may have less time for your spouse and for yourself. You may need your children to help with more household responsibilities including care of their grandparent. These role changes can be hard adjustments for everyone.

  • Determine your ease with becoming the decision-maker and the person with authority.
  • Be prepared for resistance from your parent if they feel that they can no longer set the rules, control their situation or fear losing independence, but make sure your parent is involved in the decision-making process and that their perspectives and preferences are heard.
  • When possible, allow for negotiation in decision-making activities offering a greater chance for a win-win situation.
  • Consider how your parent can contribute to the household, such as babysitting, doing light chores or making financial contributions.
  • Think about your spouse’s and children’s readiness to help with caregiving, and their comfort level with having a grandparent in the home—particularly if he or she suffers from dementia.
  • Think about ways in which your parent’s traditional interests, routines and food preferences can be accommodated, without unnecessarily disrupting your own lives.
  • Agree upon financial arrangements up front. Given available resources, will your parent be able to contribute towards food and utilities?
  • If you have siblings or other family members with whom your parent is comfortable, can you agree in advance that they can stay with your parent, or accommodate your parent temporarily in their home so you are able to get a break from caregiving or take a vacation?

Lifestyle Changes. You and your parent probably have very different lifestyles. Sleeping cycles, eating patterns and preferences, social calendars, interests, and daily activities may need adjustments in order to guarantee a smooth transition.

  • Talk about and plan how to accommodate bedtimes, nap schedules and sleeping habits of all family members in the house.
  • Discuss what types of food you eat, when meals are prepared, and if special diets are required and how they will be accommodated.
  • Assess whether smoking/nonsmoking or drinking/nondrinking practices are compatible.
  • Consider how you can support your parent’s continued participation in social networks such as visiting friends and attending a place of worship and how transportation to these and other activities will be managed.
  • Encourage your parent to keep enjoyable and safe hobbies.
  • Consider whether your parent will be fully integrated into your family’s activities or whether he/she will maintain an independent social life.
  • Consider how the household noise level and general activity pattern will affect your parent.

The Loss of Your Time. Caregiving requires a significant amount of time and is very likely to impact your work, family time, personal time and sleep.

  • Determine the amount of time you can devote to your parent’s care needs. When will you make phone calls for appointments or to set up needed services? When will you be able to take your parent to medical appointments?
  • Evaluate whether you will need to make adjustments to your current work schedule and if your employer is willing to accommodate those adjustments.
  • If you will reduce your work hours, determine the implications for your financial picture, career advancement, health insurance and Social Security and retirement benefits.
  • Consider whether you will have time for your spouse, children and friends.
  • If your parent requires full-time supervision, who will provide it while you are at work or attending your children’s activities?
  • Consider the reduced private time you will have to pursue your own friendships, hobbies or exercise, and your need for some time alone on a daily basis.
  • Expect that you will, at times, feel your energy is spent and will need to find a way to rest.
  • Investigate how to arrange for some time off from caregiving duties (“respite”) and enlist the help of your family members, friends, a paid aide or a home care agency.

Your Home. Physical living arrangements must be adequate if your parent is to move in. There must be enough room and a layout that is adaptable to an older adult who may have mobility or vision problems. A home may require special adaptations to make it safe. Many of these changes are inexpensive but need time and planning to implement. Some families consider an addition to their home or the use of an “accessory apartment” (or “accessory dwelling unit”)—a fully equipped modular unit that may be temporarily or permanently set up in the yard or elsewhere on a lot. Home health agencies and/or area agencies on aging may have the resources to do a home assessment in terms of home modifications, and safe lift/transfer techniques that are recommended to better assist your parent.

  • Evaluate the amount of available space and whether there is enough privacy.
  • Think about where your parent will sleep. How will a child feel if he or she has to give up a room for a grandparent?
  • If possible, locate your parent on the first floor in order to avoid stairs.
  • Consider major changes that may be needed in order to accommodate any disabilities or mobility problems, for example wheelchair-accessible bathroom and shower, different door handles, lower light switches.
  • Determine what assistive devices may be needed such as grab bars in the bathroom, raised toilet seats, handrails and a ramp.
  • If your parent wanders and is at risk for becoming lost, consider special locks, door chimes and other devices that will help keep doors and windows safely secured.
  • Look through your home for hazards such as dangling cords, toxins, slippery surfaces, unsteady chairs, throw rugs. Consider installing a stove-top shut-off device.
  • Install bright non-glare lights above all walkways, and low-cost adhesive strips on steps and other potentially slippery areas such as bathrooms and showers.
  • Adjust temperature controls so that the house is not too hot or too cold. Be aware that older people often like their environment warmer and this may affect both your comfort and your utility bills.
  • Discuss how you might incorporate your parent’s furniture into your home.
  • Review how existing or new pets will be integrated into the new home situation.
  • Think about having a system or alarm set up so you can be alerted when your parent needs help.

Financial Arrangements

Individual financial information may not typically be shared among your family members. However, if you are caring for a parent it may become necessary for you to become more involved in his/her personal finances, including paying bills, monitoring accounts and managing retirement accounts or investments. This can create problems with your parent or siblings who may question your access to and how you are handling your parent’s money.

  • Agree upon how much, if any, financial payment your parent will provide towards their living expenses. Will they pay for rent, food and other costs?
  • Your siblings may be resentful of any money you might receive. Openly discuss financial arrangements with siblings to keep them updated on new expenditures and apprised of accounts.
  • Come to an agreement between your parent and siblings regarding out-of-pocket expenses.
  • Consider a preparing a formal legal document called a Personal Care Agreement describing any payment to you from your parent for accommodations or your caregiving services.
  • To save time, investigate the option of automatic payment of recurring bills.
  • Look into free or low-cost services that assist with Medicare paperwork for older adults.
  • Be sure such legal documents are in place such as Durable Power of Attorney, Representative Payee, Advanced Directives, (See Resources section for the Fact Sheet Legal Planning for Incapacity.

Managing the Move

It is likely that your parent has lived in his or her current home for many years and has developed strong ties to community, family, friends, healthcare providers, social life and daily routine. Packing and moving out of a house is a significant chore for anybody, but for the older adult who has decades’ worth of memories and possessions, moving can represent a tremendous emotional challenge. Moving away from this familiar and comfortable setting is difficult and can cause great sadness. Furthermore, leaving one’s own house represents a decrease in independence and signals a new life stage. Often the thought of packing and sorting decades of history, memories and possessions is daunting enough to delay even considering the difficult decision to relocate. But there are some resources to help.

In some communities, there are specialized companies that will, for a fee, help organize a senior’s move to a new location and arrange to sell or give away unneeded furniture and possessions. They will also help pack and unpack. Regardless of services used, in most families the adult children still play key roles in this task. Open communication will help ease the way through these challenges.

While you help your parent pack, talk through the difficult feelings, acknowledge the loss that your parent is experiencing and reassure him/her that you are all making the best decision possible. Allow time and opportunity to reminisce. Reassure your parent that you will still be involved in their life regardless of their living arrangements—even in a new community you will want to ensure that the quality of care are services meet your parent’s needs.

If your parent owns the home, consider renting it to tenants. The rental income can help defray extra costs that the family may incur, or help pay for the care provided in other community settings, and offer certain tax benefits. In addition, renting the home, rather than selling, can also give your parent a longer transitional period to adjust to new living arrangements. Selling a long-time residence can seem very final, and can add an extra dimension of anxiety to the transition.

Your parent will need time to adjust to his/her new living environment and role with your family. Your patience and support will help make this transition smoother. An outside counselor may also be helpful. For additional advice on moving your parent to a new living situation, see the FCA Fact Sheet Downsizing Your Home: A Checklist for Caregivers.

Rewards

Despite the challenges, many adult children find that providing support and care for their parents is one of the most rewarding experiences they have ever had. Parents can contribute to the family through sharing their past and become an integral part of your household. Grandchildren have the unique opportunity to learn and absorb family history. Caregiving carries with it the extraordinary opportunity to give back what your parent once provided to you.

Recommended Reading

Elder Care Made Easier. Somers, M., 2006, Addicus Books.

How to Care for Aging Parents: A Complete Guide, Morris, V., 2004, Workman Publishing.

Moving for Seniors: A Step-by-Step Workbook, Morris, B., 2001, Smooth Transitions.

The Essential Guide to Caring for Aging Parents, Rhodes, L., 2012. Alpha Books (Penguin Group).

Resources

Family Caregiver Alliance
National Center on Caregiving

785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org (link sends e-mail)
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 SHEETS

All FCA Fact Sheets are available online at www.caregiver.org/fact-sheets. Print versions are available to purchase online by visiting www.caregiver.org/fca-publication-order-form.

Caregiving With Your Siblings
Community Care Options
Downsizing a Home: A Checklist for Caregivers
Hiring In-Home Help
Holding a Family Meeting
Legal Planning for Incapacity
Personal Care Agreements

ORGANIZATIONS

AARP
601 E St., NW
Washington DC 20049
(888) 687-2277

Administration for Community Living
U.S. Department of Health & Human Services
330 C St., SW
Washington, DC 20201
(202) 401-4634

Aging Life Care Association (formerly the National Association of Professional Geriatric
Care Managers)

Alzheimer’s Association
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
(800) 272-3900

Eden Alternative
P.O. Box 18369
Rochester, NY 14618
(585) 461-3951

Eldercare Locator
Locate Area Agencies on Aging and other resources
(800) 677-1116

LongTermCare.gov
Online tool to help you “Find your path forward.”

Medicare and Medicaid
(800) MEDICARE

National Center for Assisted Living
Offers Choosing an Assisted Living Residence: A Consumer’s Guide

U.S. Department of Housing and Urban Development
Housing Counseling Agency
451 7th St., SW
Washington, DC 20410
(202) 708-1112

Village to Village Network
(617)-299-9NET

Citation

https://www.caregiver.org/home-away-home-relocating-your-parents

Prepared by Family Caregiver Alliance. Reviewed by Brenda Klutz,B & R Klutz Consulting, LLC, formerly Deputy Director, Licensing and Certification, California Department of Health Care Services. Funding for this fact sheet update provided by Genentech. Last updated in 2012. © 2003, 2012 Family Caregiver Alliance. All rights reserved.

Copyright © 1996–2017 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

 

Healthy Eating and Alzheimer’s Disease

(National Institute on Aging) Eating healthy foods helps everyone stay well. It’s even more important for people with Alzheimer’s disease. Here are some tips for healthy eating.

Buying and Preparing Food

When the person with Alzheimer’s disease lives with you:

  • Buy healthy foods such as vegetables, fruits, and whole-grain products. Be sure to buy foods that the person likes and can eat.
  • Give the person choices about what to eat—for example, “Would you like green beans or salad?”
  • Buy food that is easy to prepare, such as premade salads and single food portions.

It may be helpful to have someone else make meals or use a service such as Meals on Wheels, which brings meals right to your home. For more information, contact the Meals on Wheels organization at 1-888-998-6325 or w ww.mealsonwheelsamerica.org .

When a person with early-stage Alzheimer’s disease lives alone, you can buy foods that the person doesn’t need to cook. Call to remind him or her to eat.

Maintain Familiar Routines

Change can be difficult for a person with Alzheimer’s disease. Maintaining familiar routines and serving favorite foods can make mealtimes easier. They can help the person know what to expect and feel more relaxed. If a home health aide or other professional provides care, family members should tell this caregiver about the person’s preferences.

Try these tips:

  • View mealtimes as opportunities for social interaction. A warm and happy tone of voice can set the mood.
  • Be patient and give the person enough time to finish the meal.
  • Respect personal, cultural, and religious food preferences, such as eating tortillas instead of bread or avoiding pork.
  • If the person has always eaten meals at specific times, continue to serve meals at those times.
  • Serve meals in a consistent, familiar place and way whenever possible.
  • Avoid new routines, such as serving breakfast to a person who has never routinely eaten breakfast.

As Alzheimer’s progresses, familiar routines and food choices may need to be adapted to meet the person’s changing needs. For example, a family custom of serving appetizers before dinner can be preserved, but higher-calorie items might be offered to help maintain the person’s weight.

Stay Safe

In the early stage of Alzheimer’s, people’s eating habits usually do not change. When changes do occur, living alone may not be safe anymore. Look for these signs to see if living alone is no longer safe for the person with Alzheimer’s:

  • The person forgets to eat.
  • Food has burned because it was left on the stove.
  • The oven isn’t turned off.

Other difficulties, such as not sitting down long enough for meals and refusing to eat, can arise in the middle and late stages of the disease. These changes can lead to poor nourishment, dehydration, abnormally low blood pressure, and other problems.

Caregivers should monitor the person’s weight and eating habits to make sure he or she is not eating too little or too much. Other things to look for include appetite changes, the person’s level of physical activity, and problems with chewing or swallowing. Talk with the person’s doctor about changes in eating habits.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Healthy Eating for a Person with Alzheimer’s

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)
adear@nia.nih.gov
www.nia.nih.gov/alzheimers
The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Alzheimer’s Association
1-800-272-3900 (toll-free, 24/7)
1-866-403-3073 (TTY/toll-free)
info@alz.org
www.alz.org

Alzheimer’s Foundation of America
1-866-232-8484 (toll-free)
info@alzfdn.org
www.alzfdn.org

Choose My Plate
www.choosemyplate.gov

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

Meals on Wheels America
1-888-998-6325 (toll-free)
info@mealsonwheelsamerica.org
www.mealsonwheelsamerica.org

Citation

https://www.nia.nih.gov/health/healthy-eating-and-alzheimers-disease

 

What is Survival Among Patients with Parkinson, Dementia with Lewy Bodies?

(The JAMA Network Journals) An article published by JAMA Neurology compares survival rates among patients with synucleinopathies, including Parkinson disease, dementia with Lewy bodies, Parkinson disease dementia and multiple system atrophy with parkinsonism, with individuals in the general population.

The population-based study by Rodolfo Savica, M.D., Ph.D., and coauthors of the Mayo Clinic, Rochester Minn., included all the residents of Minnesota’s Olmsted County and identified 461 patients with synucleinopathies and 452 patients without for comparison.

From 1991 through 2010, the 461 patients with a synucleinopathy diagnosis included 309 with Parkinson disease, 81 with dementia with Lewy bodies, 55 with Parkinson disease dementia and 16 with multiple system atrophy with parkinsonism. Parkinsonism was defined as the presence of at least 2 of 4 cardinal signs: rest tremor, bradykinesia, rigidity and impaired postural reflexes.

Of the 461 patients with synucleinopathies, 316 (68.6 percent) died during follow-up, while among the 452 participants used for comparison, 220 (48.7 percent) died during follow-up.

Overall, patients with synucleinopathies died about two years earlier than participants without in the comparison group. The highest risk of death was seen among patients with multiple system atrophy with parkinsonism, followed by patients with dementia with Lewy bodies, Parkinson disease dementia and Parkinson disease, according to the results.

The authors note some limitations of their study. “Our findings contribute important new evidence about the natural history and survival of people affected by synucleinopathies of various types. Our results may be helpful to guide clinicians counseling patients and caregivers,” according to the article.

Citation

https://media.jamanetwork.com/news-item/ survival-among-patients-parkinson-dementia-lewy-bodies/

Journal Reference:

Rodolfo Savica, Brandon R. Grossardt, James H. Bower, J. Eric Ahlskog, Bradley F. Boeve, Jonathan Graff-Radford, Walter A. Rocca, Michelle M. Mielke. Survival and Causes of Death Among People With Clinically Diagnosed Synucleinopathies With Parkinsonism. JAMA Neurology, 2017; DOI: 10.1001/jamaneurol.2017.0603

Copyright © 2017 American Medical Association.

 

A Decline in Navigational Skills Could Predict Neurodegenerative Disease

(Cell Press) Changes in how humans map their surroundings and construct and follow directions as they age have been understudied compared to effects on memory and learning. However, age-related declines in navigational ability are independent of those more well-known cognitive downturns, and could form the basis for tools for the early diagnosis of Alzheimer’s disease. Researchers discuss this possibility in a review published August 30 in the journal Neuron.

“In humans, navigation is much more cumbersome to research than learning or memory,” says Thomas Wolbers, a neuroscientist specializing in aging and cognition at the German Center for Neurodegenerative Diseases.

“But it has such a dramatic impact on everyday life, and the key structures of the ‘navigational network’ in the brain are very sensitive to both ordinary healthy aging and pathological factors.”

Currently, Alzheimer’s disease is diagnosed based on an individual’s medical history, genetic risk factors, and performance on tests that measure memory, language, and reasoning impairments. Wolbers and his colleagues from the United States and the United Kingdom suggest that navigational impairments are among the earliest signs of the Alzheimer’s progression. Healthy older individuals, for instance, strongly prefer to map objects and landmarks relative to their body position (an egocentric strategy) rather than in relation to external objects such as global landmarks or boundaries (an allocentric strategy). This strategic bias makes it much more difficult for them to learn the spatial layout of an environment and can thus reduce their mobility, a worrisome sign in younger people.

“It can take up to 10 years after the onset of Alzheimer’s for someone to show abnormal results on the standard cognitive tests that are available today, and that’s 10 years that you’ve lost for treating it, should an effective therapy come along down the road,” says Wolbers.

“This is where navigation-based diagnostics could contribute, by reducing that window.”

Navigational testing is held back by a pair of obstacles, though both are receding. The first is the lack of standard tests for navigational tasks and population norms with which to evaluate results. More-affordable and portable virtual reality technology is making standardized test conditions possible, however, while co-author Jan Wiener of the United Kingdom’s Bournemouth University is one of the scientists behind the mobile app Sea Hero Quest, a game designed to collect population data on navigation decisions for dementia research.

The second holdup is that navigational abilities vary wildly from person to person, more so than for memory or other cognitive functions, Wolbers says. An effective diagnostic tool might need to be longitudinal, tracking an individual’s navigation behaviors at different points in time throughout their life and looking for signs of early or accelerated decline.

“We need longitudinal human data to be able to definitively say whether a change in navigational function can be used to predict whether Alzheimer’s or any other neurodegenerative disease will develop later on,” Wolbers says.

With such data and the improved virtual reality setups, the researchers conclude that a navigational test battery analogous to those used for memory and learning will be feasible. For now, Wolbers suggests that people train and use the navigational skills hardwired into their brains, especially in an age of commonplace in-car and handheld GPS technology.

“There is growing evidence that if you rely too much on that technology it can have a detrimental effect on your navigational ability and in the long term may even be a risk to develop pathological conditions,” he says.

Citation

https://www.eurekalert.org/pub_releases/2017-08/cp-adi082417.php

Journal Reference:

Lester et al. The Aging Navigational System. Neuron, 2017 DOI: 10.1016/j.neuron.2017.06.037

Copyright © 2017 by the American Association for the Advancement of Science (AAAS)

 

New Antibodies Target Structures Shared by Proteins Thought to Worsen Major Neurological Diseases

(NYU Langone Health) A new kind of antibody targets a feature shared by proteins thought to cause the most damage in Alzheimer’s disease, Parkinson’s disease, and related conditions, creating potential for a unified treatment approach.

This is the finding of a study led by researchers from NYU School of Medicine and published online August 29 in Scientific Reports.

The new study is based on decades of work arguing that the contribution to disease of key proteins — amyloid beta and tau in Alzheimer’s, alpha-synuclein in Parkinson’s, and prion proteins in conditions like mad cow disease — is driven by certain, toxic forms dominated by a common structure: bundles of “beta sheets” in clumped proteins.

In tissues from autopsied patients with these diseases and in live mice, experiments demonstrated how the study antibodies target and remove only these toxic forms, say the authors, and without triggering the immune toxicity that has frustrated treatment development efforts to date.

“In an atmosphere where countless treatments have failed in clinical trials over the last 15 years, the fact that our approach continues to be effective in rigorous tests should be of interest to our peers and the industry, even if it runs contrary to conventional thinking,” says corresponding author Fernando Goni, PhD, research associate professor in the Department of Neurology at NYU School of Medicine.

“While we still have a number of milestones to reach before this work is ready for clinical testing, our results suggest that these antibodies may halt key pathological mechanisms across several neurological diseases and regardless of disease stage,” says corresponding author Thomas Wisniewski, MD, director of the Center for Cognitive Neurology, Silberstein Alzheimer’s Institute, and the NYU Alzheimer’s Disease Center.

New Approach

The study focuses on proteins that form important structures in the brain. The instant they form as chains of amino acids, proteins fold into complex shapes needed to do their jobs. Unfortunately, proteins can also “misfold” for countless reasons (genetic abnormalities, toxins, age-associated cell processes, inflammation, etc.) that eventually cause the diseases addressed by the current study. Cells and tissues die as misshapen proteins stop working and build up, but the field has struggled to pinpoint which of these shifting forms to target as the key drivers of disease.

Many research efforts, including the current study, seek to design antibodies, which are immune proteins that can attach to and remove a disease-related target molecule. Past and ongoing attempts have used antibodies that target the initial, short chains of amino acids that serve as basic, repeating structural units (monomers) of each misfolded protein. Still others targeted end-stage fibrils, each made of thousands of monomers, which accumulate in plaques and tangles that tissues cannot eliminate. Neither approach has yielded an effective therapy.

In that light, Goni, Wisniewski and colleagues designed their antibodies to target instead the “oligomers” formed as several misfolded monomers associate and acquire the “beta-sheet” shape, but not yet large enough to fibrilize. These intermediate forms may be uniquely toxic, say many in the field, because, unlike fibrils, they can dissolve and move in and out of cells, and from one cell to another. This mobility may explain the “prion-like” progression seen in misfolding diseases where abnormal proteins cause normal ones to misfold in a domino effect that damages nerve cells and their connections in the brain.

Importantly, growing toxic oligomers of amyloid beta, tau, alpha synuclein, and prion protein become increasingly dominated by twisted strands of amino acids, the beta sheet spatial arrangements that let the strands stack up.

To design new kinds of antibodies, the research team zeroed in on a small 13-amino-acid peptide, derived from the extremely rare genetic disease called British amyloidosis, but not present in the rest of the human population. They converted it into large, stable oligomer with more than 90 percent “beta-sheet” structure (the p13Bri immunogen) that could now be “seen” by the mammalian immune system. It also triggered a specific antibody response that solved problems encountered with standard approaches. By immunizing mice with p13Bri at high doses, they forced the production of extremely rare antibodies against beta sheets in toxic oligomers.

The researchers say that their rare antibodies, activated by protein fragments seen only in a rare disease, have almost zero chance of triggering unwanted immune responses to normal proteins with similar sequences (autotoxicity), the downfall of many previous attempts. Finally, the team screened their lead antibodies against tissues taken from the brains of human patients with Alzheimer’s, Parkinson’s and prion diseases. Only the six monoclonal antibodies that reacted to toxic oligomers from at least two misfolded proteins from two diseases were selected for further study.

“This publication details the first system for making antibodies that truly target only toxic oligomers of misfolded proteins dominated by beta sheets across several diseases, and without regard to the amino-acid makeup of each misfolded protein’s monomer,” says Goni.

Citation

http://nyulangone.org/press-releases/new-antibodies-target-structures-shared-by-proteins-thought-to-worsen-major-neurological-diseases

Journal Reference:

Fernando Goñi, Mitchell Martá-Ariza, Daniel Peyser, Krystal Herline, Thomas Wisniewski. Production of Monoclonal Antibodies to Pathologic β-sheet Oligomeric Conformers in Neurodegenerative Diseases. Scientific Reports, 2017; 7 (1) DOI: 10.1038/s41598-017-10393-z

© 2017 NYU Langone Hospitals

 

Noninvasive Eye Scan Could Detect Key Signs of Alzheimer’s Disease Years Before Patients Show Symptoms

(Cedars-Sinai) Cedars-Sinai neuroscience investigators have found that Alzheimer’s disease affects the retina — the back of the eye — similarly to the way it affects the brain. The study also revealed that an investigational, noninvasive eye scan could detect the key signs of Alzheimer’s disease years before patients experience symptoms.

Using a high-definition eye scan developed especially for the study, researchers detected the crucial warning signs of Alzheimer’s disease:amyloid-beta deposits, a buildup of toxic proteins. The findings represent a major advancement toward identifying people at high risk for the debilitating condition years sooner.

The study, published today in JCI Insight,comes amid a sharp rise in the number of people affected by the disease. Today, more than 5 million Americans have Alzheimer’s disease. That number is expected to triple by 2050, according to the Alzheimer’s Association.

“The findings suggest that the retina may serve as a reliable source for Alzheimer’s disease diagnosis,” said the study’s senior lead author, Maya Koronyo-Hamaoui, PhD, a principal investigator and associate professor in the departments of Neurosurgery and Biomedical Sciences at Cedars-Sinai.

“One of the major advantages of analyzing the retina is the repeatability, which allows us to monitor patients and potentially the progression of their disease.”

Yosef Koronyo, MSc, a research associate in the Department of Neurosurgery and first author on the study, said another key finding from the new study was the discovery of amyloid plaques in previously overlooked peripheral regions of the retina. He noted that the plaque amount in the retina correlated with plaque amount in specific areas of the brain

“Now we know exactly where to look to find the signs of Alzheimer’s disease as early as possible,” said Koronyo.

Keith L. Black, MD, chair of the Cedars-Sinai Department of Neurosurgery and director of the Maxine Dunitz Neurosurgical Institute, said the findings offer hope for early detection when intervention could be most effective.

“Our hope is that eventually the investigational eye scan will be used as a screening device to detect the disease early enough to intervene and change the course of the disorder with medications and lifestyle changes,” said Black, who co-led the study.

For decades, the only way to officially diagnose the debilitating condition was to survey and analyze a patient’s brain after the patient died. In recent years, physicians have relied on positron emission tomography scans of the brains of living people to provide evidence of the disease, but the technology is expensive and invasive, requiring the patient to be injected with radioactive tracers.

In an effort to find a more cost-effective and less invasive technique, the Cedars-Sinai research team collaborated with investigators at NeuroVision Imaging, the Australian agency Commonwealth Scientific and Industrial Research Organisation, the University of Southern California and UCLA to translate their noninvasive eye screening approach to humans.

The published results are based on a clinical trial conducted on 16 Alzheimer’s disease patients who drank a solution that included curcumin, a natural component of the spice turmeric. The curcumin causes amyloid plaque in the retina to “light up” and be detected by the scan. The patients were then compared to a group of younger, cognitively normal individuals.

Koronyo-Hamaoui and Koronyo also were key authors of the original results, published in the journal Neuroimage in 2011 and first presented at the Alzheimer’s Association’s International Conference in 2010.

Investigators who contributed to the 2017 study include David Biggs, Ernesto Barron, David S. Boyer, Joel A. Pearlman, William J. Au, Shawn J. Kile, Austin Blanco, Dieu-Trang Fuchs, Adeel Ashfaq, Sally Frautschy, Gregory M. Cole, Carol A. Miller, David R. Hinton and Steven R. Verdooner.

The study was funded by the National Institutes of Health/National Institute on Aging, The Marciano Family Foundation and The Saban Family Foundation.

See a video about the retinal imaging device and Black’s motivation for conceiving it.

Citation

https://www.cedars-sinai.edu/About-Us/News/News-Releases-2017/Noninvasive-Eye-Scan-Could-Detect-Key-Signs-of-Alzheimers-Disease-Years-Before-Patients-Show-Symptoms.aspx

2017 © Cedars-Sinai.

 

Physical Activity in Midlife Not Linked to Cognitive Fitness in Later Years, Long-Term Study Shows

(Johns Hopkins University Bloomberg School of Public Health) A study led by Johns Hopkins Bloomberg School of Public Health researchers that tracked activity levels of 646 adults over 30 years found that, contrary to previous research, exercise in mid-life was not linked to cognitive fitness in later years.

The finding suggests that physical activity may not help maintain cognitive function, or help avoid or delay the onset of the debilitating conditions like dementia and Alzheimer’s. Alzheimer’s affects as many as 30 million, mostly older people throughout the world. With no known treatment or cure, researchers are trying to identify measures that might help delay Alzheimer’s onset or limit its reach.

The study, which appears online in the Journal of Alzheimer’s Disease, did find that activity levels among study participants in the later years were associated with high cognitive function two years later. This supports earlier research findings that exercise may help to maintain cognitive fitness in the short term.

“This study reminds us that physical activity has all sorts of benefits for people, including promoting cardiovascular health, managing optimal weight levels and maintaining bone and muscle mass,” says Alden L. Gross, assistant professor in the Bloomberg School’s Department of Epidemiology.

“Unfortunately it is too early for us to say the same about exercise and Alzheimer’s, especially as a possible long-term preventive measure.”

There is no known treatment or cure for Alzheimer’s or dementia, syndromes that involves declining memory, confusion and eventually limited ability to perform daily tasks. To date, there are no preventive measures, such as physical exercise, brain games or a diet regimen, that have been proven to help delay or altogether prevent its onset.

In the US, an estimated five million adults are currently living with Alzheimer’s, according to the Centers for Disease Control and Prevention (CDC), and the CDC predicts that this number will rise to 14 million by 2050.

The researchers undertook the study because of a growing consensus that physical activity levels helps prevent Alzheimer’s, however much of the evidence for this thinking is based on cross-sectional studies that compare responses from one group of participants with another at a given point in time or within a very short duration, typically several years.

Such studies can be valuable for confirming associations, or links, but not at establishing actual causation because of what is known as reverse causation: it is possible that people who eventually develop dementia may reduce their physical activity and exercise as dementia advances. That’s where longitudinal studies, which look at the same group of participants over a long time, are more helpful.

The researchers used data from the Johns Hopkins Precursors study, which registered students studying at Johns Hopkins School of Medicine between 1948 and 1964 and tracked them with annual questionnaires about their overall health. The researchers note that the cohort’s homogeneity — students at a selective medical school — meant that any differences in physical activity and later cognitive function could not be explained by other differences among participants.

The median age for study participants was 46 years in 1978 and 77 years in 2008. Every several years, the questionnaire asked about exercise, physical activity and physical limitations. The researchers used responses from 1978 through 2008 from 646 participants (598 men, 48 women) to calculate so-called metabolic equivalents, which quantify physical activity levels. Participants were also asked whether they regularly exercise to a sweat.

The team administered cognitive tests in 2008, and, using participants’ medical records, scored for dementia through 2011. The researchers identified 28, or 4.5 percent of the cohort, to have Alzheimer’s.

No physical activity measure in mid-life was associated with late-life cognitive fitness or onset of dementia. The study confirmed findings of other cross-sectional studies, that higher levels of physical activity and exercise measured close in time to the cognitive testing were associated with better cognitive functioning. The authors also looked at whether patterns of change in physical activity levels over the life span were associated with cognitive health and found no relationships.

The idea that exercise might play a role in preventing or limiting Alzheimer’s makes sense, the researchers say, because physical activity, at least in mouse models, has shown less accumulation of B-amyloid plaques, which are thought to play a role in dementia, including Alzheimer’s. In addition, physical activity improves blood flow to the brain, which is linked to better cognitive performance. This may explain why studies find that exercise may contribute to cognitive fitness in the short term.

“These findings have implications for intervention work moving forward,” says Gross. “We still need to focus on causes and mechanisms of Alzheimer’s and dementia, since we don’t yet know which preventive measures may or may not work.

For now, when I speak in the community about Alzheimer’s, I find that people take some relief in understanding that there wasn’t anything that anyone might have done to avoid a loved one developing Alzheimer’s.

Of course, the goal for researchers is to identify factors that may help older people maintain their cognitive function into their later years. More long-term studies like the Precursors study are needed.”

Citation

http://www.jhsph.edu/news/physical-activity-in-midlife-not-linked-to-cognitive-fitness-in-later-years-long-term-study-suggests.html

Journal Reference:

Alden L. Gross, Haidong Lu, Lucy Meoni, Joseph J. Gallo, Jennifer A. Schrack, A. Richey Sharrett. Physical Activity in Midlife is not Associated with Cognitive Health in Later Life Among Cognitively Normal Older Adults. Journal of Alzheimer’s Disease, 2017; 59 (4): 1349 DOI: 10.3233/JAD-170290

Copyright Johns Hopkins Bloomberg School of Public Health