The effect of dementia on a person’s life can be measured in the ability to perform Activities of Daily Living and Instrumental Activities of Daily Living. ADLs and IADLs are things everyone does in our day-to-day lives, and they become progressively more difficult for someone with Alzheimer’s disease or a related dementia.
The association between ADLs, IADLs and dementia has been demonstrated in studies. Even basic ADLs require complex thinking, so watching for signs of trouble in your loved one is an important part of diagnosing dementia. If you know how your loved one is changing, then knowing what’s next becomes easier, and predicting someone’s ability to function is part of developing a care plan that manages symptoms and maintains the best possible quality of life.
Assessing ADLs and IADLs is also a necessary step in two important parts of aging with dementia:
– Applying for financial assistance through Medicaid and other programs
– Moving into assisted living / memory care
On this page, we’ll cover the basics about ADLs and IADLs for people with dementia, and provide more information on assessments and applying for financial help.
Activities of Daily Living are the basic tasks related to health and safety that a person does to live independently. ADLs include:
1. Bathing and/or showering
2. Brushing teeth
3. Grooming (cutting nails, combing hair, etc.)
4. Going to the bathroom (continence/toileting)
5. Getting dressed
6. Mobility (also called “ambulating,” meaning rising from a chair or bed and walking from room to room)
Instrumental Activities of Daily Living are tasks related to living within a community. The ADLs above are necessary for basic functioning and even survival, whereas IADLs are the things a person does to maintain quality of life. IADLs include:
1. Housekeeping (maintenance/cleaning)
2. Managing money
3. Managing medications
7. Communicating by phone or email
IADLs are the sorts of activities that can be helped by service companies. Meals can be delivered for someone who can’t cook, for example, or a money manager can handle a person’s finances. ADLs are different in that they require hands-on care. It is harder to hire help for the physical act of eating, for example, than to have meals delivered.
Dementia’s impact can be measured by a person’s ability to perform activities of daily living and instrumental activities of daily living. Here we list prominent symptoms of Alzheimer’s disease and related dementias (Frontotemporal dementia, Lewy body dementia, etc.) and how those symptoms relate to ADLs and IADLs:
The loss of executive functioning in the brain means someone has difficulty planning, organizing, and processing. Getting dressed seems basic, for example, but if your executive functioning is affected you might not understand putting pants on before underwear.
Memory problems mean someone can simply forget to do things like brush their teeth or hair, take a shower, or put on clothes. In middle and late stages of dementia, memory problems can cause someone to forget the purpose of an object like a hairbrush.
Judgement can be impacted by dementia and can lead someone to wear the wrong type of clothing in hot or cold weather, or ignore nails that need to be trimmed, or refuse to eat despite being hungry.
Coordination trouble can make physical acts like buttoning a shirt too difficult.
Problems with attention can make it impossible to complete a task around distractions. Getting dressed, for instance, might be too hard for someone with dementia if there are loud noises outside.
Aggressiveness can lead someone to refuse your help with ADLs. It could be insulting to receive help with tasks they’ve done their whole lives, like get dressed.
Vision problems like losing spatial judgement is another dementia symptom that makes everyday tasks like getting on and off a toilet, or picking up objects like a toothbrush, more difficult.
Apathy can cause someone with dementia to simply lose interest in tasks like bathing.
A decline in the ability to perform instrumental activities of daily living is often among the first signs of early dementia. It can seem normal for someone who is aging to become less interested in managing finances or cooking, but one of the earliest signs of dementia is a loss of focus. If you’re having a hard time concentrating, you’ll still be able to feed yourself and go to the bathroom, but making bank deposits or cooking a meal will seem too hard.
Activities of daily living are so normal and commonplace (people feed and clean themselves for most of their lives) that they often don’t go away from a person until the later stages of dementia. This is when caregiving becomes more important, to help someone dress or bathe. More hands-on help is required. The loss of ADLs, in fact, is a major reason people move into assisted living homes, including assisted living homes with memory care where staff is specifically trained to help people with dementia.
You will see signs in your loved one with dementia when ADLs become difficult. When a person begins to look disheveled or dirty, for example, it might mean they’ve lost the ability to clean themselves.
|Loss of Ability to Perform ADLs and IADLs by Stage of Dementia|
|Stage of Dementia||IADL abilities||ADL abilities|
|Mild Cognitive Impairment (MCI)||Some difficulties with driving, managing money||Unaffected in earliest stages|
|Early||Needs hands-on assistance with IADLs||Minimal assistance needed, like gentle reminders to do tasks like bathe or get dressed|
|Middle||Needs IADLs done by someone else, but may still observe and minimally participate||Needs help like prompts and modeling, but can still accomplish some tasks independently|
|Late||Needs total assistance with all IADLs||Needs total assistance with ADLs, except that the ability to self-feed often remains|
Because Alzheimer’s disease and related dementias are progressive conditions, the ability to perform activities of daily living and instrumental activities of daily living deteriorates over time. This is why ability to perform ADLs is often the benchmark for assessing dementia, and why it’s crucial for assisted living and memory care homes to know exactly what ADLs your loved one needs help with before moving in.
In almost every state, a person moving into assisted living must form a contract with the residence called a service plan or care plan. No one should move into a home that cannot address their needs, so those needs must be documented. The assisted living home needs to know that when your loved one moves in, these specific ADLs (see the list above) are what they need help with. When ADL needs are established in writing, care can be thoroughly planned and you can know your loved one is adequately taken care of.
Making notes about which ADLs and IADLs a person is capable of is a good step toward better care at home or, especially, communicating with doctors and assisted living homes. You can take these notes yourself or use online tools and assessments that make the process simpler. For more, see “How To Assess” below.
An important step in knowing if your loved one qualifies for Medicaid or Long Term Care (LTC) insurance is to get an assessment of the ability to perform activities of daily living and instrumental activities of daily living. Case managers with insurance companies will want to know exactly which benefits should be given to a person, and this is often accomplished by a comprehensive evaluation of ADL and IADL abilities.
State Medicaid programs make money available to people based on their finances (assets and income) and medical needs. In most states there are programs for covering costs associated with getting personal care. The amounts paid out are determined very specifically by assessing how many ADLs a person needs help with, and to what degree. To know what the process is for getting an assessment for Medicaid, contact your local Area Agency on Aging.
Your own evaluation of ADLs will not be enough for insurance or assisted living. To get a professional assessment of abilities, begin by making an appointment with your primary care doctor. Before that appointment, however, you’ll want to do an assessment with your own notes or with an online activities of daily living assessment tool.
When your loved one begins showing signs of dementia (and especially after a diagnosis is made) it’s a good idea to keep notes on functional abilities. What actions are difficult? This helps with healthcare, because if a doctor asks about symptoms you can be very specific. Telling the difference between Alzheimer’s disease and other dementias may require knowing which specific tasks are a problem. (People with Frontotemporal dementia, for example, will be more prone to aggression and apathy than memory loss.)
There are many different assessment tools for the activities of daily living. The Katz Index is the most well known. Click here for an online version of the Katz ADL tool. However, the Klein-Bell, Cleveland and the Bristol Scales are equally as valid.
Caregivers and health professionals can use the assessment to anticipate future symptoms and develop an effective care plan. The important goal is to record observations so you are actively monitoring your loved one’s abilities. This helps manage and predict symptoms to maintain the highest possible quality of life.