Change in daily care needs
Many times, the first signs of dementia are seen in people’s daily habits. Dementia can make every day activities difficult. As the disease advances, your loved one may need more support in their daily care.
Some daily care activities your loved one may need help with include:
Medical managementOrganizing medication, medical recommendations and regular activity
Managing medications. Refilling prescriptions. Attending doctor’s appointments. These are all key factors to staying healthy. But people with dementia may forget to take their medication or may not follow directions from their doctor.
Healthy eating
Cooking, eating, managing groceries and considering food preferences
Eating regular, healthy meals may be difficult for people with dementia. As a person’s cognitive function becomes worse, their eating habits might change. They may get confused by food choices, forget to eat or have trouble using utensils.
Maintaining relationships over time
As dementia advances, your loved one’s ability to process information gets weaker. Their responses can become delayed. This can make participating in conversation and maintaining relationships difficult. But finding ways to continue communicating and opportunities for social engagement is important. This will help your and your loved one’s quality of life.
Some elements of maintaining relationships you may want to consider include:
Communicating tactics
Conflict-coping methods, managing aggression and non-verbal communication
Communicating with your loved one may need more patience and understanding due to dementia symptoms. You may not be able to communicate with your loved one in the same way you used to. But having communication strategies in place can help you maintain your bond. It may be time to consider your strategy for communicating with your loved one if they are…
- Speaking less often or losing their train of thought frequently
- Repeating themselves over and over
- Argumentative, irritable or aggressive
- Having trouble finding the right words or relying on gestures
See pages 20–23 for techniques to support communication behaviors.
Social engagement
Combating social isolation, connecting to community and maintaining friendships
Dementia, as well as the stigma surrounding it, often makes it hard for a person to socialize, leading to a higher risk of being socially isolated and lonely. Staying engaged with your community and seeking out social support can increase the quality of life for you and your loved one. It may be time to consider your strategy for your loved one’s social engagement if
they are…
- Exhibiting signs of loneliness, depression or boredom
- Unable to spend time with friends in the way they used to
- Uninterested or less engaged in activities they used to enjoy
Refer to local and national resources for socialization on pages 80–83.
Planning for long-term care
As dementia progresses, people begin to lose their ability to make reliable decisions. You may find yourself making or contributing to decisions about your loved one’s life. We have already discussed some decisions about your loved one’s daily care above. You will also need to start thinking about their long-term needs. These can relate to financial, legal and healthcare matters.
Talking to your loved one about their wishes is important. It may help you make these difficult decisions when the time comes. Knowing what is coming before it does will make you a powerful decision maker.
Some long-term care items you may want to consider include:
Care setting Hiring in-home support, considering a nursing home and hospice care
This may be with or without support from in-home nurses or homemakers. Or, moving to a community living environment or nursing home may be the right choice for your situation.
It may be time to consider your strategy for your loved one’s care setting if they are…
- Becoming isolated or showing signs of boredom
- Unsafe (wandering, leaving stove on, opening door for strangers)
- Recurring illness
- Requiring increased supervision
Finances
Tracking daily spending, managing bills and assuming financial power of attorney
It is important to think about finances as you plan for your loved one’s long-term care. There could be a range of involvement based on your need. It could mean managing the cost of care. It could mean talking about or monitoring your loved one’s finances. It could also be about planning for future expenses. You may also need the legal appointment of someone to make decisions for your loved one. Talk to your loved one early on about who they want to give decision-making power.
It may be time to consider your strategy for your loved one’s care finances if they are…
- Forgetting to pay bills
- Concerned about what will happen to their assets and property in the future
- Making irregular purchases
- Unable to navigate insurance or state benefits
It’s also important to separate who will assist with financial power of attorney, in addition to healthcare power of attorney.
Advance Care Plan
Managing medical decisions, conveying your loved one’s wishes and assuming role of advance care decision maker (power of attorney or surrogate decision maker)
As dementia progresses, people may start to lose their ability to reason and speak. Towards the end of this progression, they might also lose their abilities in moving, feeding or toileting, needing 24/7 care and medical assistance. When your loved one reaches this stage, someone else will need to become your loved one’s decision maker. This is a power of attorney or surrogate. It is important to do Advance Care Planning early. This should happen when your loved one is able to contribute and express wishes about what matters to them the most. It could be their spiritual beliefs and who they trust to make decisions for them.
It may be time to consider your strategy for your loved one’s advance medical care if they are…
- Concerned about medical treatments they might receive in the future
- Interested in incorporating their spiritual or religious beliefs into their end-of-life plans
- Having more trouble making clear decisions
- Worried about hospice or palliative care
See pages 66–71 for more detailed information on Advance Care Planning.
What is Advance Care Planning (ACP)?
Advance Care Planning (ACP) involves planning for future care and choices when health changes occur (severe illness, terminal stages) or functional changes (walking, eating, decision making).
Why is Advance Care Planning important?
Early discussion of ACP in dementia is important to empower the person living with dementia express their preferences and values in their own voice while they can.
ACP can be used as a road map for care during early/middle/late stages of dementia. However, having the person with dementia to express their preferences for care, acceptable levels of changes and care providers/locations is important while they are best able to participate fully in the discussion.
An early discussion between the person living with dementia and the caregiver gives the caregiver the opportunity to become an advocate for the person living with dementia. Caregivers can also limit guilt, confusion or loneliness of making decisions for another by knowing their loved one’s wishes early.
It is important to review the documented discussions in the future to provide better clarity as new changes develop.
What types of choices are in an Advance Care Plan?
- Living Will: preferences for end-of-life care: breathing/heart resuscitation, feeding tubes
- Concerns and hopes for the future setting of care: level of function acceptable or not, thoughts regarding medical therapies
- Financial power of attorney: establishing who should manage finances
- Healthcare power of attorney: appointing a substitute decision maker for health
Establishing an Advance Care Plan
What you need: A copy of your state’s advance directive for health document. Clarify with the medical team if your loved one is able to clearly state who they trust as a decision maker and what their choice is for care if their condition is considered “terminal” (life expectancy of months to days).
Who you need: Your loved one, a witness, the person trusted as decision maker; make sure the decision maker understands the wishes. You do not need an attorney to establish the healthcare power of attorney portion. You do need one to create the financial power of attorney or a property will.
When: Do this early while your loved one can still state their choices. If your loved one cannot, an appointed decision maker will create the plan. This person is often decided by closeness in family relation or court appointment.
Where: You can establish in your doctor’s office, hospital, notary, bank. How: Keep a copy for the healthcare power of attorney (trusted decision maker), give a copy to the doctor and store the original in a safe place.
See page 81 for Advance Care Planning resources.
Advance Care Planning:
Early discussion worksheet with your loved one
Discuss with your loved one’s the following questions and bring responses to discuss in the next doctor visit.
What does your loved one value now? What would they value if things changed?
What is your loved one’s biggest fear or hope as dementia progresses?
How have changes brought about by dementia changed the day-to-day life of your loved one?
Who will your loved one trust to support them in future decisions if they are unable to fully express their wishes?