What to do at home after a PPA diagnosis: the first month

Last updated 12 September 2026 · Written for the spouse, partner, or adult child who came home from the appointment

You have a diagnosis with a name you had never heard before, and nobody gave you much to do about it. The neurologist explained the condition. The internet explains the condition. What nobody explains is Tuesday night: what to say at dinner, what to stop saying, what to put on the kitchen table, which phone calls are worth making this week.

That is what this page is for. It is ordered by what to do first.

What PPA is, in the words you will need

Aphasia means trouble with language: finding words, understanding them, reading, writing. It is not a problem with intelligence, and it is not a problem with hearing.

Primary progressive aphasia (PPA) is a condition in which language breaks down first, while memory and other thinking stay relatively intact in the early years. "Primary" means language is the first and main problem. "Progressive" means it gets worse over time. It is a neurodegenerative condition, which means the brain cells involved in language are gradually being lost (UCSF Memory and Aging Center).

Three variants are recognised (Roheger and colleagues, Cochrane 2024; Volkmer and colleagues, 2020). Ask which one applies, because it changes what home practice should contain.

• Semantic variant (svPPA). Word meaning fades. They may not recognise what an object is or what a word means. Repeating, articulating, and grammar hold up longer.
• Logopenic variant (lvPPA). Long pauses hunting for a word, sound errors ("cuv" for "cup"), trouble repeating a sentence back. They still know what things mean. Understanding whole sentences gets harder.
• Nonfluent or agrammatic variant (nfvPPA). Speech becomes effortful and halting, small grammar words drop out, the mouth will not cooperate. Word meaning stays.

A speech-language pathologist (SLP) is the clinician who works on this. In the UK and Australia the same job is called a speech and language therapist (SLT). This page uses SLP throughout.

Week one: what actually helps now

1. Change how you talk

This is the highest-value thing in the first month, and it costs nothing. The approach with the broadest evidence base in aphasia is not something done to the person with aphasia. It is training for the people who talk to them, usually called communication partner training.

Simmons-Mackie and colleagues reviewed 31 studies in 2010 and another 25 in 2016. All 56 reported positive outcomes, across different severities and different kinds of partner, with benefits still present up to 23 months in some studies. Their recommendation is that partner training should be conducted to improve partner skill in supporting the communication of people with chronic aphasia.

The most striking finding is from Kagan and colleagues in 2001. Twenty volunteers were trained in supported conversation and twenty were not. The trained volunteers scored higher, as you would expect. The people with aphasia they talked with also scored higher on social and message-exchange skills, even though those people received no training at all. Your skill changes what they can do.

The practical techniques are in the section below, and there is a free course listed at the end of this page.

2. Put paper and markers everywhere

Thick black markers and plain pads, in every room they talk in: kitchen table, sofa side table, bedside, the car, their bag. Buy six of each. Make it a household rule that no conversation happens without one in reach.

Writing the key word in large print while you speak is one of the core supported-conversation techniques, and it works in both directions: it helps them understand you, and it gives them a channel when speech fails. A small whiteboard in the kitchen with the day's plan, one word per item, does the same job.

3. Take the photos now

Photograph twenty to forty of their actual things, actual people, and actual places, with them choosing what gets photographed. Their mug, not a stock photo of a mug. Their kitchen, their sister, their dog.

This matters because the studies that produced lasting results used pictures of the person's own objects. Henry and colleagues credit that personal relevance for engagement and for the gains holding up. Suárez-González and colleagues advise choosing familiar, frequently used things, and matching photos to the objects actually in the home so that practice carries over into daily life.

Do this while they can still help choose. It gets harder later.

4. Book the speech-language pathologist

Not when speech gets bad. Now. The reasons are in the section on what to ask them.

5. Tell the few people who need to know

The ones who will be in the room regularly. Send them the "what to stop doing" list below. A well-meaning visitor who quizzes and corrects can undo a week of careful work in one afternoon.

For going out, print a wallet card. Northwestern's Mesulam Center publishes a PPA card that explains the condition and asks people to give time, speak simply, not shout, and ask yes/no questions. The National Aphasia Association has a personalised aphasia ID card. Both are free and linked at the end.

What can wait

• Reading everything. You do not need the research literature this month. You need six habits and one clinician.
• Buying apps and devices. Nothing you buy in week one will matter as much as how you talk in week one.
• Deciding about the long term. Care arrangements, driving, work. These are real, and they are not this week's problem.
• Telling everyone. The wider circle can wait until you have your own footing.
• Legal and financial paperwork. Worth starting soon, and easier while language is at its best. Put it on the month-two list rather than tonight's.

What to stop doing

This list is short and it matters more than anything you add.

• Stop asking questions you already know the answer to. "What's this?" "Who's that in the photo?" "What did we do yesterday?" These are test questions. When researchers asked people with aphasia, family members, and therapists what they most wanted changed, all three groups independently named test questions. They also appear on the list of conversation barriers used in the Better Conversations with PPA programme.
• Stop correcting. The AFTD guidance is to accept what was said, no matter how imperfectly, and add to it to build the conversation. Better Conversations with PPA names message-focused communication, rather than perfect interaction, as one of its core components.
• Stop finishing their sentences unless they have asked you to. Ask them now what they want you to do when they get stuck, while asking is still easy.
• Stop raising your voice. Volume does not help. This is a language problem, not a hearing problem.
• Stop talking about them in the room as though they were not there. Include them in conversations happening around them, use adult topics and a normal adult tone.
• Stop turning every moment into practice. This is the big one, and it has its own page: Coach, not tester.

How to talk to each other, starting tonight

These techniques come from Supported Conversation for Adults with Aphasia, developed at the Aphasia Institute in Toronto. The idea underneath them is that people with aphasia know more than they can say, and a skilled partner can reveal it. There are two jobs.

Getting the message in

• Get their attention first. Say their name, face them, make eye contact.
• Short, simple, direct sentences, in a normal adult tone. "I'm going to the store to buy fruit," rather than a longer sentence with the important part at the end.
• Use everyday words. "Give" rather than "donate."
• A short sentence with context beats a single word. "Put on your shoes" while pointing at the shoes beats "shoes."
• Slow down. Pause between ideas. Stress the key words.
• Avoid pronouns. Say "your sister," not "she."
• Write the key word large as you say it, and leave it where they can see it.
• One idea at a time. One question at a time. One picture at a time.
• Talk about the here and now where you can. References to other times are harder.
• Turn the television off. Face them. Quiet room, decent light.
• Watch their face. That is your check on whether it landed. Do not assume.

Getting the message out

• Give time. Count to five silently before you offer anything. Ten is better.
• Ask yes/no questions first, then a fixed choice ("water or coffee?"), then work from general to specific.
• Invite other channels. "Can you show me?" "Point to it." "Write the first letter." "Draw it."
• Accept any channel that works. A gesture, a drawing, a photo on their phone, a written fragment. That is the target, not a perfect sentence.
• Agree a filling-in-the-blank plan in advance, as AFTD suggests. When they are stuck, do they want you to supply the word, wait, write it, or offer choices? The answer may differ at home and in public. Ask now.

Checking and repairing

• Recap. "Let me make sure I've got this," then repeat it back using their words, their gestures, and the written key words.
• Do not pretend to understand. Say "I didn't get that, can you show me another way?"
• Put breakdowns on yourself. "I'm not following well today," never "you're not making sense."
• When they are clearly stuck on something they know, say so out loud: "I know you know this."
• When it is frustrating, name it and share it. "This is frustrating. We'll get there." Then drop it and come back after lunch, with a different channel.

Setting up a daily practice habit

Start with the honest frame. Practice does not stop or slow the disease. What the research shows is narrower and still worth having: practice holds on to the specific words you practise, for longer than they would otherwise last.

Henry and colleagues (2019) worked with 18 people with the semantic and logopenic variants. One clinician session a week, plus daily home practice of under fifteen minutes. Gains on the practised words were large and were still above baseline at twelve months, even though the same people showed measurable cognitive decline across that year. Gains spread only a little to words they had not practised. Doubling the number of clinician sessions added nothing. The daily home practice was the active ingredient.

Two findings shape what goes on the list:

• Protect the words they can still say. Meyer and colleagues (2018) found that gains on words the person could already name at the start persisted up to fifteen months, while gains on words already lost had faded by eight months. Their advice, if time is short, is to spend it on words that are still retrievable and genuinely useful. A reasonable split is about two-thirds words they still have, one-third words you are trying to get back.
• Stopping means losing it. Volkmer and colleagues note that gains degrade quickly without ongoing practice. The semantic-variant consensus review found that maintenance revision, done more lightly than the original learning, holds at least 80% of the items.

Croot and colleagues put the goal plainly: preserving retrieval of a core vocabulary for as long as possible. That is the honest ambition. Not recovery. Keeping the words that matter most usable, and keeping the person in the conversation.

What the habit looks like

• Fifteen to twenty minutes, five or six days a week. Same time, same chair, same format. Fifteen minutes daily is the best-evidenced floor. More than thirty is unnecessary and adds fatigue.
• Twenty to thirty words in the active set, their own photos, chosen with them.
• Every card ends with the word said correctly, whatever help it took. If they are stuck, give the answer straight away and without comment, and have them say it. Aim for a success rate around 80 to 90%. If it is lower, the set is too hard or too long.
• Let them ask for the hint. You wait. They signal.
• Warm up with two or three easy words and finish with easy ones. Start and end on success.
• Keep the numbers out of sight. Any tracking is for you and the SLP, not for them.
• Stop on frustration. A five-minute session is information, not a failure. The semantic-variant review says it directly: when practice becomes stressful, it may not be desirable to continue.

Anxiety is not a side issue here. Word retrieval is itself a physical stressor for people with aphasia, and anxiety affects somewhere between 27% and 46% of people with PPA depending on the variant. Pressure makes language worse in the moment. Everything above is also an anxiety-reduction technique.

How you behave during that fifteen minutes matters more than which exercise you choose. That is the subject of the companion page, Coach, not tester.

When to involve a speech-language pathologist, and what to ask

Involve one in the first month. Not later, when speech has got worse.

The reason is the order in which things have to be learned. Hinshelwood and Henry describe a phased approach: education and counselling first, work on naming and fluency while the ability to learn is there, and compensatory tools such as communication books and photo boards introduced early, so they are well practised before the skills needed to learn them are gone. The semantic-variant review makes the same point about communication aids. A tool introduced too late cannot be learned.

One warning about finding the right clinician. Volkmer and colleagues note that most SLPs receive little training in PPA and may discharge a patient early, on the reasoning that a progressive condition will not improve. In the United States, the Jimmo settlement means Medicare coverage is based on a beneficiary's need for skilled care rather than the ability to improve. You are allowed to say that out loud.

Questions worth asking at the first appointment

• Which variant is this, and what does that change about what we practise at home?
• Will you write goals for me as the communication partner, as well as goals for them?
• Do you use Better Conversations with PPA, or Communication Bridge-style work with the couple? Would you run the four-session programme with us?
• Which twenty to thirty words should be on the list? Which are worth protecting because they can still say them?
• What order should I give hints in? Meaning first, or first sound first?
• How much help should I be giving? What does a good session look like?
• What should I record, and what would you actually read at the next appointment?
• What am I currently doing that I should stop?
• When do we start a communication book or a photo board, and who builds it?
• How often do we re-check the word list?

If there is a research programme near you, ask about it. Communication Bridge at Northwestern is a telehealth programme for people with PPA and their partners; enquiries go to communicationbridge@northwestern.edu or (312) 503-4012. Ask what is currently enrolling.

Free things worth doing this month

• Introduction to Supported Conversation eLearning, Aphasia Institute. Self-paced, free, aimed at healthcare providers but open to anyone. The concepts are the ones families need.
• Better Conversations with Aphasia, UCL. Free, ten to fifteen hours, online, explicitly includes families. Built around video of real conversations.
• Better Conversations with PPA, UCL. Written for clinicians, freely available. Hand it to your SLP and ask for the four sessions.
• AFTD HelpLine, 866-507-7222. Support groups, information, respite grants.
• PPA care partner support groups. The National Aphasia Association and Northwestern's Mesulam Center both run free online groups on a monthly schedule. Check the current times on their pages before relying on them.
• The PPA wallet card from the Mesulam Center, and the personalised aphasia ID card from the National Aphasia Association. Print both.
• Live Captions on their phone or tablet. It turns speech into text on screen, which helps when understanding is the problem.

What the evidence does and does not say

Being straight about this is part of being useful.

What holds up well: partner training has consistently positive results across 56 studies. Partner-involved, participation-focused therapy does better on the outcomes families care about than drill alone. In the Communication Bridge-2 trial (Rogalski and colleagues, 2025), 95 couples across four countries, the arm that trained both people, used personal photos, and set personal goals beat the impairment-only arm on goal attainment, 66.7% of goals improved against 49.1%, and did not show the twelve-month decline in communication participation that the control arm showed. The Better Conversations with PPA pilot trial (Volkmer and colleagues, 2023) worked with 18 couples and found 29 of 30 goals achieved or exceeded.

The honest caveat: the 2024 Cochrane review rates the randomised evidence for behavioural treatment in PPA as very-low certainty, because the trials are small. The effect on practised words is consistent across studies. The certainty attached to it is low. Anyone who tells you otherwise is selling something.

And the thing no study disputes: none of this stops the disease. Practice keeps particular words available for longer and keeps the person participating. That is worth a great deal. It is not a cure and it is not a brake.

What the road looks like

PPA progresses, and the strategies have to progress with it. AFTD puts it as: what worked today may not work tomorrow. In a published account by the spouse of a man with the semantic variant, a personal dictionary they built together was a safety net early on and was no longer helpful late. Participants in the Better Conversations work asked for a range of personalised strategies that keep evolving as the disease progresses.

There is also a timing effect worth knowing. In a twenty-month case study of a man with the semantic variant using spaced flashcard practice, words added in the first ten months stuck far better than words added later. Another reason the first month is not a bad time to start.

Build the toolkit now, while they can still help design it. Expect to rebuild it.

Look after yourself, starting this month

This is not a footnote. Difficulty in conversation predicts caregiver burden in PPA, and the path it takes runs through the care partner's own depression. A pilot programme of seven weekly video sessions for spouses of people with PPA reported lower depression and less relationship strain afterwards.

Three things for month one: get into a support group, find one person you can be completely honest with, and share the practice sessions with someone else in the family. Adult children taking a slot each spreads the work, gives variety, and keeps the marriage from turning into a clinic.

Sources

• Kagan A, Black SE, Duchan JF, Simmons-Mackie N, Square P. Training volunteers as conversation partners using SCA. JSLHR 2001. pubmed.ncbi.nlm.nih.gov/11407567
• Simmons-Mackie N, et al. Communication partner training in aphasia: a systematic review. Arch Phys Med Rehabil 2010; updated review 2016. archives-pmr.org
• Henry ML, et al. Treatment for word retrieval in semantic and logopenic variants of PPA. 2019. PMC6802912
• Meyer AM, et al. Long-term maintenance in PPA naming treatment. 2018. PMC6066454
• Suárez-González A, et al. Semantic variant PPA consensus review. 2021. PMC8699306
• Rogalski EJ, et al. Communication Bridge-2 primary and secondary outcomes. Alzheimer's & Dementia 2025. PMC11712820
• Volkmer A, et al. Randomised controlled pilot study of Better Conversations with PPA. Pilot Feasibility Stud 2023. PMC10203671
• Volkmer A, Rogalski E, Henry M, et al. Speech and language therapy approaches to managing PPA. Pract Neurol 2020. UCL Discovery
• Roheger M, et al. Cochrane review of interventions for PPA. 2024. cochranelibrary.com
• Croot K, et al. Lexical retrieval treatment in PPA. Cortex 2019. sciencedirect.com
• Evans WS, et al. Modified spaced retrieval flashcard practice in semantic variant PPA. 2016. frontiersin.org
• Counseling and Care Partner Training in PPA. Perspectives ASHA SIG 2021. PMC9351599
• Aphasia partnership training: what outcomes do people with aphasia, family members and SLTs expect? 2025. PMC11842014
• Communication difficulties and caregiving burden in aphasic dementia. PMC8682255
• A spouse's perspective on communication breakdowns in svPPA. 2025. PMC12367059
• PPA Tele-Savvy pilot for caregivers. Innov Aging 2023. PMC10737934
• Aphasia Institute, Supported Conversation for Adults with Aphasia. aphasia.ca · free eLearning
• UCL, Better Conversations with Aphasia (free course). extendstore.ucl.ac.uk
• AFTD, Communicating with Persons Living with PPA. PDF · support and HelpLine
• Mesulam Center PPA wallet card. PDF · support groups
• National Aphasia Association aphasia ID card. aphasia.org · PPA care partner group
• UCSF Memory and Aging Center, Primary Progressive Aphasia. memory.ucsf.edu