Caring for a parent with dementia or Alzheimer’s

Think of yourself as a care partner, not a boss. Keep them included in decisions while they can take part, and talk openly so they feel heard.

Try saying…

• “Would you like the blue shirt or the green one?”
• “I’d really value your opinion on this.”
• “Can you show me how you used to make this?”

After a diagnosis, families often worry and step in, even on things the person can still do. That can feel overwhelming to your parent, who may resent decisions being made for them.

Ideas that help

• Ask “What can they still do, with a little help?” before taking a task away
• Break a job into steps and let them do the parts they can
• Talk with their doctor about real safety risks, like driving

Research with adult children suggests the relationship before the illness can shape how caring feels now. If your parent hurt you in the past, mixed or numb feelings make sense.

You can decide how much hands-on care you give, and let others or paid staff do the rest. The Boundaries when you care for family guide can help you decide where your limits are.

Many adult children grieve small losses as they happen: the advice, the phone calls, being called by name. This is sometimes called ambiguous loss, because they are here and also not fully here.

The Anticipatory grief: grieving before a loss guide, and the grief section of Caring for yourself as a dementia carer, go deeper.

Try listening to their favourite music, watching a film, going for a walk or looking at old photos. Focus on what they can still do and enjoy, rather than what is getting harder.

Small ideas

• Cook a family recipe together, letting them stir or taste
• Fold laundry side by side and chat
• Look through a photo album and let them tell the stories
• Play the songs they danced to when they were young

When someone else takes over caring tasks that feel stressful or upsetting for you both, tension often eases. That extra support can free up time to enjoy each other’s company.

Personal care, like bathing, is one task you might share with a sibling, an aide or a day program.

Arguing or correcting usually adds to distress. Answer the feeling behind the words, keep sentences short and stay calm.

Try saying…

• Instead of “Mum died years ago”: “You’re thinking about Grandma. Tell me about her.”
• Instead of “I already told you”: “We’re going at two. I’ll remind you.”
• Instead of “You remember me, don’t you?”: “Hi Dad, it’s Sam, your son.”

Ask yourself what you miss most. If your parent was the one you confided in, is there a friend or relative you could turn to now? If you can no longer do a shared hobby, try a simpler version or do it with someone else.

Care tends to fall on whoever lives nearest, or on daughters, without anyone deciding it. Naming these unspoken rules out loud is the first step to sharing more fairly.

Resentment can build when care is not shared. Dementia UK suggests talking about tasks calmly and saying clearly what you need.

Write down every task, from baths to bills to the weekly call. Free online care calendars let family members sign up for specific jobs, so help shows up regularly.

Siblings who live far away can still own real jobs: paying bills online, sorting insurance, calling to chat, or flying in to cover a week so you get a true break.

Siblings who visit less often may honestly not see what you see day to day. That gap can turn into arguments about how much help is needed.

Ideas that help

• Ask the doctor or a social worker to join a family call and explain the stage
• Invite them to stay for a few days, not a few hours
• Keep short notes on hard days to share, without blame

• “I can’t keep doing all of this alone. Can we talk about how to share it?”
• “Could you take Dad to his appointments on the first Monday of each month?”
• “If you can’t be here, could you handle the bills and insurance calls?”
• “I know you love her too. Let’s focus on what she would want.”

For running a family meeting and writing a care agreement, see the Sharing dementia care: family, kids & care staff guide.

If you have no siblings, or they won’t help, your team can be built from others: cousins, friends, neighbours, faith groups, adult day programs and paid help. No one can provide care around the clock alone.

If you are distracted, stressed or need time off at short notice, colleagues may draw the wrong conclusions. Telling your manager you care for a parent with dementia helps them understand and offer support.

Try saying…

• “My dad has dementia and I’m one of his main carers. I want to keep doing good work here. Can we talk about some flexibility?”
• “Some weeks I may need to leave early for appointments. Here’s how I’ll cover my work.”

The Family and Medical Leave Act lets eligible employees take up to 12 workweeks of unpaid, job-protected leave in a year to care for a parent with a serious health condition.

Who usually qualifies

• You have worked for the employer for at least 12 months
• You worked at least 1,250 hours in the past year
• Your employer is covered (for example, private companies with 50 or more employees, and public agencies)

Adult day programs offer a safe place for your parent to be social and join activities during the day. Meals and transport are often provided. They can give you time to work, and the chance to be social can be good for your parent too.

The Eldercare Locator (1-800-677-1116) can connect you to day programs and in-home help near your parent.

Keep a list of who can step in at short notice, and save a few days of leave for emergencies or a move into care.

The Respite and backup plan worksheet in Caring for yourself as a dementia carer can help you write this down.

Carers often feel they should do more. Yet no one can provide 24-hour care by themselves. Doing your best with real limits is not failing.

When tension runs high, families sometimes speak unkindly or shout, then feel guilty later. Frustration is understandable with dementia.

What can help

• Step into another room for a few minutes, if it is safe, and breathe
• Come back and start fresh. Your parent may not hold onto it the way you do
• Tell their doctor if their behaviour has changed. There may be a cause like pain, poor sleep or constipation

Missing your old freedom, wanting a break, and still enjoying parts of your life are all common. Breaks help you recharge so you can keep going.

Resentment often grows when care is unequal or when you have given up work or social life. It is a signal that something needs to change, not proof that you are unkind.

Many people with dementia can stay home longer with in-home aides, adult day programs, meal delivery and family visits. Home safety checks become more important as dementia progresses.

The Daily care & safety at home guide covers making a home safer.

• Does your parent want to move? What about their spouse?
• Can your home be adapted, and will someone be home?
• How does everyone in your household feel about it?
• How will it affect your job, family, money and health?
• What respite services are near you?

Assisted living sits between living independently and a nursing home, with housing, meals and support services. Memory care (special care units) are designed for people with dementia. Rules vary by state.

Nursing homes provide care around the clock and long-term medical treatment. Visit more than once, including one or two unannounced visits and at mealtimes.

Later stages & care decisions has a care home visit checklist and covers paying for care.

• Bring familiar comforts like photos, music and a favourite blanket
• Choose one family member as the main contact for staff
• Share their life story, routines and what calms them
• Ask for a copy of the care plan

The All about me (for care staff) worksheet in Sharing dementia care: family, kids & care staff is made for this.

Join your parent for meals and activities. It helps them settle and lets you get to know staff, residents and other families.

If you can, choose a place near you so visiting is easy. Ask how staff can help with phone or video calls between visits.

Staff may do things differently than you did, and that can take getting used to. With daily tasks covered, many families find they can give more attention and emotional support.

You may feel lonely or lost once your parent has moved, especially if caring filled your days. Give yourself time to recover, and use the extra time to reconnect with family and friends.

A partner may feel left out, or carry extra load at home. Agree together what you can give, especially before your parent moves in.

Try saying…

• “I know Mum is taking a lot of my time. I miss us. Can we protect Friday nights?”
• “What would help you most right now?”

Children often sense something is wrong before they are told. They need honest explanations for their age and permission to have mixed feelings.

Sharing dementia care: family, kids & care staff has words for each age and tips for visits.

Try to keep up your social life and hobbies, perhaps while your parent is at a day program or with a volunteer visitor. Activities you do alone or with others give you a break and keep you connected.

If you are juggling kids and a parent, Caught in the middle: women caring for kids and aging parents may help, whatever your gender.

Meeting people with similar experiences, in person or online, lets you share advice and feel less alone. The Alzheimer’s Association can help you find a support group.

When friends offer, be specific: “Could you sit with Mum on Thursday afternoon?” or “Could you pick up the kids from school on Tuesdays?”

With your parent’s agreement, tell family, friends and neighbours about the diagnosis and how it may affect them. Understanding reduces stigma and helps people stay in your parent’s life.

Faith groups can be part of your support system. For your parent, familiar worship, sacred music, prayer and holiday rituals may help them feel connected and remember good times.

Free and confidential, day or night. Staff can help with care planning, care options, legal and money planning, and caregiver stress.

A free U.S. government service that connects you to your parent’s local Area Agency on Aging, in-home help, adult day programs and caregiver support.

A free helpline staffed by Admiral Nurses, who are specialist dementia nurses. They can talk through relationships, guilt and care decisions.