Loneliness in cognitively normal older adults may actually be an early manifestation of Alzheimer’s disease, according to new research based on data from the Harvard Aging Brain Study. Loneliness may be associated with significant amyloid deposits, “suggesting that loneliness is a neuropsychiatric symptom relevant to preclinical Alzheimer’s disease,” reports MedPage Today. People who were classified […]
A means to prevent Alzheimer’s disease is not in the near future, but a variety of diagnostic and treatment strategies can improve quality of life by delaying the onset of symptoms, according to medical experts speaking at an Argentum Memory Care Symposium at the National Press Club. Current research largely focuses on treatments to dissolve […]
At the 2016 South by Southwest Festival, visitors to the IBM Cognitive Studio were asked to respond to three questions posted to a large wall as they entered the space: What worries you most about getting older? What emerging technology will help manage the aging process the most? What discussions are the most difficult to […]
A gene variant whose carriers are more likely to develop Alzheimer’s disease than other people may show its effects on the brain and thinking in childhood, according to a study in Neurology online. “Studying these genes in young children may ultimately give us early indications of who may be at risk for dementia in the […]
Alzheimer’s disease changes the functioning of a person’s brain. When that happens, the person’s sexual behavior can change. Some people may forget appropriate public behavior and undress or fondle themselves. Some may use vulgar words or act sexually aggressive toward a spouse or others. Still others may lose interest in sex altogether.
It’s important to remember that changes in sexual behavior are not reflections of the person’s character they’re symptoms of the disease. As a caregiver, it’s also important to get the support you need to deal with your own feelings about such behavior.
Understand causes of behavior
- Get a medical evaluation for a person who shows either an excessive interest or no interest in sex.
- Realize that sexuality and the need for touching are very human drives.
- Explore the possibility that the person craves affection and affirmation.
Consider possible reasons for inappropriate undressing:
- Time of day. The person may simply want to get ready for sleep.
- Clothing that’s too tight.
- Hot weather or an overheated room.
- The person may need to use the toilet.
Consider possible reasons for sexual displays and inappropriate or aggressive advances:
- Loss of inhibition due to changes in the brain.
- Insatiable desire due to changes in the brain.
- Misunderstood circumstances.
- Mistaking someone for one’s partner.
Consider the possible reasons for reduced sexual desire:
- Physical illness.
- Hormonal imbalance.
- Side effect of medication.
- Sensing a partner’s emotional withdrawal.
- Do not overreact or express shock.
- Avoid becoming angry or arguing.
- Don’t shame or ridicule the person.
- Try gently reminding the person when a behavior is inappropriate.
- Remember to be sensitive and reassuring. Acknowledge that masturbation feels good before distracting the person or gently relocating him or her to a private area.
Distract or redirect
- Be aware of conditions that may provoke excessive sexual interest.
- Firmly set clear limits for behavior.
- Redirect the person to a meaningful or favorite activity.
- Postpone. Tell the person, Later. Right now we must do . . .
- Provide a reality check. For example, the daughter of a man who often mistakes her for his wife, always greets him by saying, Hi Dad.
- Respond to feelings of rejection, loneliness, or a need for closeness with gentle talk, a caring pat or a hug. Establish a balance; overresponding may encourage unwanted sexual behavior.
Adjust to changes in desire
- Come to terms with the knowledge that your sexual relationship will change.
- Adjust to your partner’s excessive desire. Redirect the person to masturbation.
- Consider separate bedrooms.
- Adjust to your partner’s reduced desire. Get a medical evaluation for your partner.
- Lack of desire could stem from physical problems or be a side effect of medication.
- Retain a sense of intimacy by sharing touch and reminiscing together.
- Prepare yourself for the time when your partner no longer recognizes you. Try not to take this change personally. It’s normal to feel lonely and rejected.
- Know that it’s common, if sexual relations continue, for the caregiver to feel a sense of guilt.
- Know that it may be possible to continue a caring sexual relationship if you take the lead.
- Realize that it’s common for a caregiver to lose sexual desire because of the demands of caregiving, the changing role from intimate partner to caregiver, and changes taking place in the person’s personality.
Take care of yourself
- Do what feels best for you.
- Do not feel guilty if you are no longer attracted to your partner and want to end the sexual relationship. Find new ways to connect with each other.
- Consider dating, if it feels right for you.
- Know that there is no right or wrong approach.
- Join a support group.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research.
Updated October 2004
Finding What’s Best for You
Everyone needs a break. If you are a caregiver, you may need a break from caregiving tasks. If you have dementia, you may want a break from the daily routine and have the opportunity to meet others who share some of the same challenges. Respite care can help, by providing a new environment or time to relax. It can be for a few hours or several days or weeks depending on your particular needs and interests.
What is respite care?
Respite refers to a short time of rest or relief. It provides a break from the typical care routine allowing the caregiver some down time while the person with dementia continues to receive care from qualified individuals and has the opportunity to have different experiences.
An individual can receive respite care:
- From paid staff, volunteers, family or friends
- At home, a community organization or a residential care center
- For part of the day, evening or overnight
- Occasionally or on a regular basis
Why use respite care services?
Some caregivers work or have other responsibilities in addition to providing care. Respite care can give a caregiver the time and assistance required to meet these personal needs.
- Respite care can provide the caregiver with:
- A chance to spend time with other friends and family, or to just relax
- Time to take care of errands such as shopping, exercising, getting a haircut or going to the doctor
- Comfort or peace of mind knowing that the person with dementia is spending time with another caring individual
The person with dementia is experiencing many changes and challenges, too, and may also need variety in his or her routine and social interactions.
Respite care services can give the person with dementia an opportunity to:
- Interact with others having similar experiences
- Spend time in a safe, supportive environment
- Participate in enjoyable activities designed to match personal abilities and needs
What are the different kinds of respite care services?
There are a number of ways that respite care can be provided. Following are descriptions of five common types.
1. In-home respite care
These respite care services are provided in the home to assist the caregiver and the person with dementia. Services vary in type and can include:
Help with supervision, recreational activities and visiting
Personal care services
Help with bathing, dressing, toileting, exercising and other daily activities
Help with housekeeping, shopping and meal preparation
Skilled care services
Help with certain medical services or care
In-home aides can be employed privately, through an agency or as part of a government program. Be sure the aide and services are appropriate for your specific needs. Cost, level of training and specific services provided will vary among workers and agencies. Generally, Medicare does not pay for this type of help, but financial assistance may be available.
Some respite care aides have received training about Alzheimers disease and the unique needs of a person with the disease. It is important that the in-home aide is knowledgeable or at least willing to learn about Alzheimer’s disease and effective approaches to care.
2. Adult day centers
An adult day center provides care outside the home and is designed to meet individual needs while supporting strengths, abilities and independence. Participants have the opportunity to interact with others while being part of a structured environment.
Daily activities may include music, recreation, discussion and support groups. Staff may include a nurse, social worker and recreation or music therapist. However, staffing can vary across centers. If the person with Alzheimer’s requires medical services (i.e., insulin shots, help with medication, etc.) be sure to ask if staff provides medical assistance.
Many caregivers who work during the day find this type of center very helpful as they try to balance a job with caregiving duties. Hours of service vary at each center, but some are open from seven to 10 hours per day, five days a week. Some may even offer weekend and evening hours, and most centers provide a meal or snacks.
3. Informal respite care
Many times, a family member, close friend, neighbor or volunteer is willing to occasionally help out, giving the caregiver time to run to the store or just take a break. Caregivers should keep in mind people who have offered to help.
Put together a schedule of times when others are available. It may be in the evenings, on the weekends or on special occasions. This can allow the caregiver some down time while the person with dementia is spending time with someone else you both trust.
4. Residential respite care
Another respite care option is a stay in a residential facility overnight, for a few days or a few weeks. Overnight care allows caregivers to take an extended break or vacation while the person with dementia stays in a supervised, safe environment designed to meet personal needs. The cost for these services varies and is usually not covered by insurance or Medicare. Be sure to make a reservation in advance, as some centersmay not always have an available room.
Sometimes, a person with dementia may have difficulty adjusting to this new environment. Regular stays can allow the overall adjustment to become easier for everyone. Over time, the staff can become more familiar with the needs of the individual, and he or she will become more comfortable with the staff and the environment.
5. Respite care for emergency situations
Accidents, surgery or unexpected trips can create a need for emergency respite care. In case an emergency does come up, it’s helpful to have done research and planning ahead of time. Call around to agencies to find out which ones offer services when the need arises. Try out a service in a non-emergency situation and see how it works. Also, talk with people you trust including family, friends and neighbors about the possibility of asking for help in case of an emergency.
How to choose a respite care service
Once you’ve assessed your needs for type of care, skills, location and frequency, you can:
- Select a service that best meets these needs
- Prepare the aide and the person with dementia
- Evaluate the service’s effectiveness or usefulness
In some areas, respite care options may be limited. Contact your local Alzheimer’s Association to find out about the respite care services that are available in your area, and talk with people in your community to gain additional information about respite care options. Then, you can call these services with specific questions or inquiries.
Describe your situation and explain what you would like from a respite care service. Ask questions over the telephone regarding qualifications, types of services offered, cost and hours of availability. The more information you receive over the phone, the easier it will be to identify which service is best for you. You will also be able to limit the number of services you interview or visit.
Selecting the respite care service
If you are selecting an in-home aide, arrange a time to meet with the person in your home. Ask plenty of questions to gain an understanding of his or her skills.
Ask prospective aides about their availability, training, background, care philosophy and experience with dementia.
Be specific about the needs and the characteristics of the person with dementia. If possible, it is a good idea for both the person with dementia and the caregiver to participate in the interview process.
If necessary, interview several aides to find the right person for your particular situation; don’t feel pressured to settle on someone who
Doesn’t make you feel comfortable. Do be aware, however, that if the home care aide is coming from a government program, your choices may be limited.
If you are selecting an adult day center, arrange a meeting with the staff and take time to look around. Assess your overall feeling about the environment. Look to see if individuals are in involved in activities and if the center looks clean.
Get a better idea of the center by attending a function there or talking with staff. Ask if they provide personalized care, and find out about both the people who work there and those who attend the center. Be direct about the needs and characteristics of the person with dementia, and find a center that is able to meet your needs.
If you are selecting a residential facility, you will be faced with additional considerations. Since you will not be around 24 hours a day to
observe care, it’s important to make sure that the environment and services will be a good fit for the person with dementia.
It is also important to see the care firsthand. Ask to take a look around and talk with the facility’s staff, as well as residents and families who use service. Again, examine the environment yourself to see if it’s clean, if residents seem content and engaged, to gauge your general sense of the facility.
Stop by one evening or weekend and see if the facility is any different than during the day. You may even want to make an unannounced visit.
For a complete guide of questions you may want to ask when selecting a respite care service, see Things to consider when choosing respite care on page 12.
Overcoming concerns about respite care
It’s normal to be apprehensive about trying something new. Some concerns you may have about using respite services:
You may be concerned about how to pay for services.
Look into financial assistance such as scholarships, sliding scale fees or government programs. Contact your local Alzheimer’s Association to learn what kind of financial assistance may be available.
You may be concerned about the dependability of the aide or service.
Those who work for an agency or facility should be reliable and well trained, and are often certified. Ask each individual and facility about training and qualifications. If hiring someone independently, interview the person thoroughly and check references.
You may believe that you should be able to do it all.
Seeking help does not make you a failure. It’s important to remember that respite services benefit the person with dementia as well as the caregiver.
Preparing the respite care provider
Whatever type or combination of respite care options you choose, you will want to familiarize the aide or staff to the needs and characteristics of the person with dementia. Be honest in your discussions. Establish a relationship and learn from each other. If necessary, define the specific tasks the respite caregiver should be responsible for.
Be sure the aide or staff gets to know the person with dementia. Provide a written history of the individual; show photographs; share stories and memories.
Use the Personal Facts and Insights form (in the Fact Sheets/Forms section on CareFinder at www.alz.org) to help the respite care provider get to know the person. Provide it as a quick reference for the aide when you are not available. When completed, it provides information about the individual, including:
- Personal habits
- Level of Cognition
- Daily Routine
- Communication Skills
- Likes and Dislikes
Preparing the person with dementia
The person with dementia will also need time to prepare for and adjust to an additional caregiver. Provide as much information as is appropriate.
Some people with dementia may initially resist new situations; to help with a smooth transition to respite care, the caregiver may say someone is coming over to help around the house or refer to a day center as asocial club or work. The service or aide may have valuable suggestions if the person with dementia is hesitant.
Evaluating the service
It is important to periodically evaluate the service you use. Many times, needs will change and a particular aide or facility may no longer be suitable. In addition, the service may suggest they can no longer meet your needs.
In either case, you will want to find a different service that can better meet your specific needs. If you do decide to change services, make a list of the limitations of the current service and compare it to other options.
When evaluating your current respite care service, consider:
- Is the service meeting your needs?
- What is working best?
- What can be improved?
- What do you need that your current service doesn’t offer?
- Can you help the service recognize and address your needs?
- If not, where can you find what you need?
Contact the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for more information on respite care options and how to evaluate what’s right for your situation.
Things to consider when choosing respite care
Use the following checklist when you are screening different respite care options to find out if the provider, service or care setting will meet your needs. If it’s helpful, make copies of this list and use it to take notes about the different care options you explore.
This list is not comprehensive, but may serve as a starting point for you to think of additional ideas, preferences and priorities.
Checklist for help in the home or home care provider
Offers the specific services you need
- Companionship:visiting, supervision and leisure activities
- Personal care: help with bathing, dressing, toileting and exercising
- Homemaking: housekeeping, shopping and cooking
- Skilled care: help with medication and other medical needs
- Able to communicate in the preferred language, if important
- Trained in first aid and CPR
- Trained in dementia care
- Experienced in working with someone
- With dementia with an agency, if important
- Bonded (protects clients from potential losses caused by the employee), if important
- Able to provide references available when you need them
- Able to provide a back-up if they are sizable to manage your specific health and behavioral care needs (list below)
Checklist for adult day care center
- Able to provide respite care
- Convenient location
- Convenient hours
- Appropriate services and programming based on your specific health and behavioral care needs including:
- Staff trained in dementia care
- Transportation available if needed
- Meals and snacks provided
- Able to dispense/monitor medications
- Enrollment in Alzheimer’s Association Safe RetunŽ program strongly encouraged
Checklist for nursing home, assisted living or other type or residential care
- Families are encouraged to participate in care planning
- Families are informed of changes in resident’s condition and care needs
- Families are encouraged to communicate with staff
- Medical care is provided to the extent that it is needed
- Personal care and assistance is provided to the extent that it is needed
- Staff recognize persons with dementia as unique individuals, and personalize care to meet specific needs, abilities and interests
- Staff trained in dementia care
Programs and Services
- Appropriate services and programming based on specific health and behavioral care needs, including:
- Planned activities (ask to see activity schedule; note if the activity listed at the time of your visit is occurring)
- Activities on the weekends or during evenings
- Activities designed to meet specific needs, interests and abilities
- Transportation available for:
- Medical appointments
- Shopping for personal items
- Indoor space that allows for freedom of movement and promotes independence
- Safe and secure indoor and outdoor areas
- Easy to navigate
- Designated family visiting area
- Regular meal and snack times
- Appetizing food (ask to see the weekly menu and come for a meal)
- Pleasant dining environment
- Family and friends able to join at mealtime
- Staff have a plan for monitoring adequate nutrition
- Staff are able to provide for any special dietary needs
- Staff provide appropriate assistance based on person’s abilities (for example, allow the person to drink independently, if able)
- No environmental distractions during meal time (noisy TV etc.)
Policies and Procedures
- Family and friends able to participate in care
- Visiting hours
- Discharge policy (learn about any situation or condition that would lead to a discharge from the facility)
- Enrollment in Alzheimer’s Association Safe Returns program strongly encouraged
State Inspection Results
If the facility is licensed, ask for recent state inspection survey. Results administrators are required to provide this information if asked.
Several things to note:
- Report should be dated within the last 915 months.
- Compare the number of deficiencies cited to the state average.
- If a facility has received a citation in a particular service area, be sure to ask questions about this area when you visit the facility.
- Beware of choosing a facility with a very high number of deficiencies compared to other facilities in the area and the state average.
(Adapted from National Citizens Coalition for Nursing Home Reform: Consumer Guide to Choosing a Nursing Home)
If the facility is a nursing home, go to the Nursing Home Compare Web site to learn how it compares to the national average at www.medicare.gov/NHCompare/Home.
When contacting provider or residential care setting, be prepared by having the following information available about the person seeking care:
- Name and Social Security number
- Physician’s name and phone number
- Diagnoses, other health and behavioral care needs
- List of medications
- Insurance coverage including Medicare, Medicaid and long-term care insurance
- Special care equipment required
Questions to ask after evaluating:
- Does the service/program meet my needs? How?
- Does the provider appear to be adequately trained? How?
- Is it convenient?
- Is it affordable?
- Good dementia care includes ensuring safety and meeting basic needs but it also means involving the person with dementia as much as possible.
- Caregivers should aim to treat a whole person, not a patient.
- When you look for a care provider, ask about special training in dementia care.
- Find out how care providers are supervised and supported in their daily work.
- A good long-term care facility should feel comfortable and homelike.
- People with dementia may be unable to express their feelings in words and behaviors may speak for them. Care providers should try to understand a behavior’s cause and consider the best solution.
The Alzheimer’s Association, a world leader in Alzheimer research, care and support, is dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s.
For reliable information and support, contact the Alzheimer’s Association: 1.800.272.3900 | www.alz.org
This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association. S.2007 Alzheimer’s Association. All rights reserved. #0107006