Late Stage Alzheimer's Support Services & Resources
Caring for a person with Alzheimer’s disease can be challenging, especially as the disease progresses and the care needs become more intense and specialized. There are various types of care and support services for those with Alzheimer’s, and knowing what’s available and the differences between the types of care can be helpful in making a decision if and when the time comes for additional support.
There are a variety of in-home services that can be used for a person with Alzheimer’s disease. Having in-home care can provide additional support while allowing the individual to stay in their own home and familiar setting. It’s also beneficial for additional support for caregivers. There are personal care services, homemaker services, and skilled caregivers (like a home health aide). Personal care services can assist with bathing, dressing, feeding, toileting, and other personal needs.1 Homemaker services include assistance with housekeeping, meal prep, or shopping.1 Skilled caregivers are generally hired through a home health agency and can provide help with wound care, injections, medications, and therapies.1 These individuals are licensed health professionals.
Costs can vary, depending on the type of service chosen, and sometimes insurance will cover things like a skilled caregiver. Do your research on in-home services and choose an agency with certified or trained caregivers. Talk with the person’s doctor about whether this type of care is an option, what to look for in a caregiver, which local agencies are reputable, and what this might look like at the current stage of the disease.
Adult day centers
Adult day centers offer a person with Alzheimer’s the opportunity to be in a social environment with various activities and therapeutic services, all within a safe environment. Services can vary based on the specific center, but generally these facilities can include counseling or support services for the person with Alzheimer’s and their family, health services, nutrition, behavior management services, personal care training, and various other special needs programs.2 A facility like this provides a place for someone with Alzheimer’s to go and keeps them active, and also provides the family or caregiver with a break from caregiving, while providing reassurance that the person is safe and cared for properly. The person doesn’t have to go every day or all day; many centers have a variety of schedules from which to choose.
Talk with the person’s doctor to see if this is an option, and with the person with Alzheimer’s to see if they’re willing to give it a chance. Costs can vary; some have sliding scales or take insurance.2 This may not be an option for everyone, but can be worth looking into.
Residential care facilities
There are several types of residential care options, usually lumped into the category of “assisted living facilities” – however, they can be quite different. Continuing care retirement communities, or CCRCs, are retirement communities that have rooms, apartments, or homes where people with conditions, including Alzheimer’s disease, can live and also get the care they need.3 Some of these communities are for those who are mainly independent, while others cater to people who need continuous care. Each one can be very different from the next. Assisted living facilities are places with either rooms or apartments and are for individuals who need assistance with some daily activities.3 Sometimes there are special Alzheimer’s units or memory care facilities. This may often be the best option in more advanced cases of Alzheimer’s disease because these facilities are designed with the safety of the patient in mind, such as methods to prevent wandering, no stairs, bathrooms with railing to prevent falls, no stoves etc. Here, staff members are trained to provide service and medical care for individuals with memory disorders. Group homes are homes where several individuals who cannot care for themselves live, along with several staff members who are on site at all times to provide care.3 Nursing homes are facilities for those who cannot take care of themselves anymore; sometimes there are Alzheimer’s units or special nursing homes.3
Questions to ask:
- How are the staff trained to deal with memory disorders?
- What happens in case of medical emergency?
- What is the monthly rate?
- How does the home communicate with the family?
- How are the staff trained to deal with behavior problems such as aggression or paranoia?
- How does the home prevent wandering?
- How does the home ensure safety and prevent accidents?
- Are the residents grouped by cognitive abilities?
- Do the residents receive personal assistance?
- What is done to encourage socialization?
- What is done to encourage exercise?
- What kind of food and nutrition is offered?
- Is a daily routine provided?
- What is the ratio of staffers per resident?
- Do the staff receive benefits? Are they paid well?
Costs can vary depending on insurance and the type of residential care facility. There may also be additional charges for different levels of care and the type of living accommodations. Not all residential care facilities are equal in terms of levels of care and type of assistance, so visit, ask questions, and talk with the person’s care team to determine which place is right for them.
Palliative care and hospice services
Many people use the terms palliative care and hospice interchangeably, and while there is some overlap, the two are actually not the same. Palliative care is a specialized area of medicine that focuses on improving the quality of life for patients and their families.4 Palliative care can be used for any chronic or serious medical condition, at any time or stage in the disease, and can be used in conjunction with curative treatments.4 It often involves a team of palliative care specialists like doctors, nurses, social workers, and others. Hospice, on the other hand, is used when life expectancy is six months or less, and is not used in conjunction with curative therapy.5 The focus is instead on managing pain and discomfort and providing support for the patient and the family.5 Hospice care can also include providing respite care for caregivers, counseling, and grief support.5 Palliative care is generally done at home or where the patient lives, while hospice can be done at home, in a hospital, or nursing facility – although there are some specialized free-standing hospice facilities.
Talk with the person’s care team about palliative options, and as Alzheimer’s disease progresses, talk with the doctor about when hospice may be indicated, and how to go about setting that up. Both are excellent aspects of care, not only for a person with Alzheimer’s, but for the rest of the family and caregivers as well.
Also, it is worth mentioning that the Alzheimer's Association has a 24/7 hotline that can be called any time for advice, help, or support: 800-272-3900.
Have you had experience with palliative care or hospice for your loved one?