Support grounded in principles of age-friendly care can help guide care planning and decisions for people who have received an Alzheimer’s diagnosis. While navigating the health care system as a caregiver or care partner for someone with Alzheimer’s can feel overwhelming, fortunately, a variety of programs, tools, and resources are available to help make the care journey easier for all parties.  

September is both World Alzheimer’s Month and Healthy Aging Month — a timely reminder that the best care for Alzheimer’s disease and related dementias is one that focuses on all facets of a patient’s health and well-being, in line with age-friendly care.

What is age-friendly care in Alzheimer's treatment? 

Age-friendly care is safe, evidence-based care that considers the whole person and their unique needs, preferences, and values.¹ Its four essential elements—the 4Ms of Age-Friendly Health Systems—when implemented together, set the stage for comprehensive, coordinated patient-centered care.

The 4Ms framework for Alzheimer's care

For caregivers of those with Alzheimer’s disease, the 4Ms can help guide care planning and communication with health care providers focused on:  

• What Matters: What is important to the patient—their needs, preferences, goals, and values 

• Medication: Mitigating risks of side effects and drug interactions of prescribed medications 

• Mind (or, Mentation): Monitoring any cognitive changes over the course of the condition 

• Mobility: Exercises that can maintain or improve aspects of movement, such as strength and flexibility, like walking, lifting weights, or other physical activity^2,3

Notably, the first M, What Matters, lays the foundation for the age-friendly framework.⁴ But because the progression of Alzheimer’s disease and related dementias gradually affects a person’s ability to communicate and make decisions, determining and incorporating their preferences may seem challenging.  

Planning ahead: Decisions and advance care directives

Early after a diagnosis of Alzheimer’s disease or related dementias, discuss with your care receiver their wishes and preferences. Establishing a healthcare proxy and advance directive can also help prepare for health care decision making (whether it’s individual or shared) as the condition progresses. If you’re not sure how to get started, refer to these resources: 

• The Conversation Project 

• My Health Checklist  

• PREPARE  

• National Institute on Aging: Advance Care Planning 

Keep notes of all conversations, documents, and records in a safe, accessible place.  

Understanding the costs of Alzheimer's and dementia care

Considering costs of care can also play a role in care planning and decision making. Familiarize yourself with your care receiver’s health insurance coverage, including: 

• What is covered?  

• What potential out-of-pocket costs may be incurred, and how will you pay for them?  

• What about long-term care insurance?  

A financial checklist for caregivers can help you think through the financial aspects of care and plan for the future. 

How shared decision making supports caregivers

Along the Alzheimer’s disease and related dementias care journey, you will need to make a variety of decisions, such as choosing among different types of care or considering whether to pursue drug therapies and/or self-care strategies. When a decision about care needs to be made, how do you make sure it reflects both what matters to your care receiver and clinical evidence and expertise?  

Shared decision making is the collaborative discussion among patients and their caregivers and clinicians to decide on treatment and care, balancing clinical evidence with patients’ preferences and values.

It is helpful in clinical conditions and scenarios when there is no one “right choice” for treatment of care. Shared decision making emphasizes collaborative communication and can help guide decisions throughout the care journey. 
 
Generally, shared decision making involves: 

• Sharing the patient’s needs, preferences, goals, and values for care 

• Discussing each care option with the healthcare provider, including what each option involves, potential benefits, and side effects. Costs of care may also be a consideration for discussion 

• Deciding on care with the healthcare provider, balancing clinical evidence with what matters to your care receiver, and evaluating regularly 

Shared decision-making discussions can be facilitated by evidence-based decision aids that show clinical, and sometimes cost, information for different care options. 

As a caregiver, your role in shared decision making may largely depend on your care receiver’s cognitive ability. A shared decision-making checklist with suggested questions can serve as a starting point for these conversations – the earlier the better. Preparing any additional questions in advance of appointments can also be helpful.  

Using FAIR Health tools for Alzheimer's care planning

FAIR Health for Older Adults is a free online resource that provides older adults and family caregivers with the clinical, financial, and educational information they need to plan for a treatment, procedure, or ongoing condition.  

The Alzheimer’s disease and related dementias section offers a set of tools and resources that can support you in various ways during the Alzheimer’s disease and related dementias care planning stage and journey.  

You can find an Alzheimer’s disease shared decision-making tool combining clinical and cost information to help you and your care receiver discuss and decide on potential therapies or self-care strategies with a health care provider. The tool outlines drug therapies and related costs for cholinesterase inhibitors, memantine, and monoclonal antibodies. Self-care options in the tool include a healthy diet, physical exercise, and brain exercises. Everyone’s condition varies, so it is important to discuss the information in these types of tools with a healthcare provider.  

Additional resources for Alzheimer's caregivers

Other offerings include: 

• FH® Total Treatment Cost tool for Alzheimer’s disease, which shows costs for a year of typical care and services. The cost information from this tool can be used alongside the shared decision-making tool in care planning. (Since each patient’s case will vary, it is important to discuss the services and costs with a healthcare provider as well.) 

• Printable checklists and educational articles on topics such as Help for Caregivers and Managing Costs of Long-Term Care. 

• Resources, including organizations and caregiver support, such as respite care, mental healthcare, and coaching, from organizations that include:  

• Best Programs for Caregiving, a free, online directory that lists proven programs that support caregivers of people living with dementia.  

• The Caregiver Action Network offers a Family Caregiver Toolbox, which helps caregivers deal with depression, find respite care, and handle different aspects of caregiving. It also offers training, peer support, and resources.  

• The Family Caregiver Alliance offers different services, education programs, and support to caregivers of adults with physical and cognitive impairments, including Alzheimer’s disease, and provides tips on how caregivers can take care of themselves.  

When it comes to planning and navigating care for Alzheimer’s disease and related dementias, knowing that there is a wide range of tools in the toolbox to make important decisions may help make the journey—however stressful—a little less daunting. 

FAIR Health for Older Adults and the Alzheimer’s disease section are made possible with funding from The John A. Hartford Foundation. The tools and resources available in the FAIR Health for Older Adults Alzheimer’s disease section are not meant to be medical advice, diagnosis, or treatment. They are meant to share information to help you engage in shared decision making with healthcare providers. Each patient’s condition will vary. The clinical options in the decision aids should be discussed with your healthcare provider. 

Sources 

1. The John A. Hartford Foundation. What Is Age-Friendly Care? Found on the internet at https://www.johnahartford.org/grants-strategy/current-strategies/age-friendly/age-friendly-care 
2. Harvard Medical School. Exercise and Alzheimer’s Disease. Found on the internet at https://hms.harvard.edu/news/exercise-alzheimers-disease  
3. R. Cámara-Calmaestra, et al. Effectiveness of Physical Exercise on Alzheimer's Disease. A Systematic Review. The Journal of Prevention of Alzheimer's Disease. October 2022. Found on the Internet at https://doi.org/10.14283/jpad.2022.57
4. Kedar Mate, et al. Evidence for the 4Ms: Interactions and Outcomes Across the Care Continuum. Journal of Aging and Health. Feb. 8, 2021. Found on the Internet at  https://doi.org/10.1177/0898264321991658

Photo by: Larry Rippel for Age-Friendly Greater Pittsburgh