Resources for Individuals with IDD and Alzheimer’s Disease and Related Dementias

Under the Administration for Community Living’s Alzheimer’s Disease Initiative Specialized Support Services program, the Massachusetts Councils on Aging received a grant to assess and provide supports for people with Alzheimer’s Disease and Related Dementias and their caregivers. The program expands statewide infrastructure to improve understanding of and supportive responses to dementia. Goals include training volunteers to deliver respite services and launching new memory cafes, especially within underserved, minority communities. It also included expanding support for families of individuals with intellectual and developmental disabilities (IDD) with ADRD.

As part of that initiative, the Massachusetts Department of Developmental Services is currently assessing the resources available to and accessed by individuals with IDD who also have a diagnosis of AD or Dementia.. 

DDS is committed to Person Centered Planning and Community Inclusion, the principles that drive service delivery.

This means:

  • Provision of services and supports that are intensive, relevant, competence building and sustaining
  • Services and supports that promote individual dignity and self determination
  • Services and supports in the least restrictive most typical settings possible
  • Services and supports in integrated settings in the community
  • Use of generic services whenever possible

Fortunately, in Massachusetts there are a number of resources you can turn to for information and assistance as it relates to ADRD. The first place to start is with the service coordinator and area office nurse. These pages include some Massachusetts resources to help you access information and other assistance.  These resource materials are provided to guide those who have received a diagnosis of dementia and are looking to next steps.

These one-page guides include:

An Overview of IDD and Dementia in Massachusetts

Individuals with intellectual and developmental disability (IDD) are living longer than in the past. Nationally, the population of individuals with IDD older than 60 is expected to increase 1.2 million by 2030. As in the general population, the number of individuals with some form of dementia will also increase. Individuals with IDD are not at increased risk of developing dementia, except for those with Down syndrome (DS), who face increased risk of developing Alzheimer’s disease. The age of onset for individuals with DS is 50-55, which is younger than in the general population. In Massachusetts about 6% of the population served by DDS has dementia. DDS is committed to Person Centered Planning and Community Inclusion principles that drive service delivery for all individuals including adults with dementia.

Here is a link to the full document

Concepts of Change Related to Aging

Everybody experiences changes as they grow older, and some degree of change is expected as a normal part of the aging process. Adults with intellectual disabilities will experience changes with age. It’s often the caregivers, who know these individuals so well, that are the first to notice changes. It’s important that caregivers pay attention to their instincts and note changes that they observe. By pointing out changes, caregivers play an important role in the early stages of understanding what those changes mean.

Here is a link to the full document

Dementia Screening and Diagnosis

Dementia is a general term that describes diseases and conditions that lead to loss of memory/learning skills and abilities to perform everyday activities. There are various types of dementia, for example: Alzheimer’s disease, Vascular (also called ‘post-stroke’ dementia), Lewy Body, and FrontoTemporal. Screening, assessment, and diagnosis are often more difficult in individuals with IDD. Individuals served by DDS are eligible to be screened for dementia. Your area office nurse can assist with a referral to a geriatrician or a neurologist who specializes in ADRD, who will consider the person’s medical history; do a medical exam, lab tests, and monitor changes over time based on observations.

Here is a link to the full document

After the Diagnosis

Massachusetts DDS is committed to providing supports that promote participation and inclusion in all aspects of community life – and this doesn’t stop after a diagnosis of dementia. The guiding principle in DDS care planning is Person Centered Care. This means that individuals being served will be involved in their care plans, including end-of-life planning, as much as they are able. Caregivers will use a dementia-friendly approach to all care, providing a safe, structured, welcoming, and predictable daily routine that allows an individual to age in place. Individuals with dementia are strongly encouraged to engage in activities that are familiar and mentally stimulating, with the overall goal of maximizing quality of life and an enjoyable and meaningful daily experience. 

Here is a link to the full document

Caregiver Support

Being a caregiver for an individual with dementia can be demanding both physically and emotionally. It takes planning and daily effort to maintain the individual’s routines, quality of life, and health. Relationships may change as the individual becomes more dependent. And as the disease progresses, caregivers may feel the stress of dealing with a terminal disease. Burnout and stress can have negative impacts on everyone. Caregivers struggle to provide quality care when they’re fatigued and stressed. Direct support staff and supervisors should pay attention to the negative effects of stress. It’s important that caregivers take care of themselves, and reach out for support if they need it.

Here is a link to the full document

Preserving Quality of Life

For individuals receiving services from DDS, there are six Quality of Life (QOL) Areas at the heart of the Individual Support Plan (ISP). These are: Rights and Dignity, Individual Control, Community Membership, Relationships, Personal Goals and Achievement, and Personal Well-Being. For an individual with dementia, the ISP must be modified to reflect the shift in focus from learning and growth to support and comfort. However, the six QOL areas are still relevant to maintain the individual’s dignity and quality of life.

Here is a link to the full document

End of Life Planning

In Massachusetts, the individual receiving care is at the center of all planning and is engaged as fully as possible, including the decisions surrounding end of life (EOL) care. The DDS Policy on Life Sustaining Treatment guides EOL planning. At the heart of the policy is informed decision making that upholds the individual’s dignity, comfort and quality of life in accordance with their wishes.

Here is a link to the full document

Activities of Daily Living

The term Activities of Daily Living, or ADL’s, refers to the activities that take place each day to take care of one’s body: bathing, dressing, grooming, toileting, eating, and walking. As dementia progresses ADL care becomes more challenging for the individual and more dependent on caregivers. There are some strategies to try when working with an individual with dementia to help ensure safety and succes: minimize distractions when giving instructions, speak clearly using words familiar to the individual, introduce one step at a time, and using physical, gestural or verbal cues is helpful. Plan ahead, have all materials ready, and once you start, keep the activity moving. Don’t rush, and keep your tone positive and friendly.

Here is a link to the full document

Action on Behavior

Changes in the individual’s behavior can be symptoms of dementia. Never take them personally, nor be judgmental. The individual will have good days and bad days, so anticipate changes, stay flexible, and maintain a sense of humor. And remember, all behaviors are a form of communication. Try to identify what’s upsetting. Pain or discomfort? An over stimulating environment? A change in routine or new person? Fatigue? It’s important to give the individual reassurance, affection, and emotional support. 

Here is a link to the full document

Action on Communication

As dementia progresses, verbal communication can be more challenging. The relationship that you’ve formed will help support your communication, even as it becomes more difficult. Communicating is more than talking and listening. It involves attitude, tone of voice, facial expressions, and body language and awareness of a person’s internal and external environments. The suggestions in the PDF below should help you to interact more effectively as you support the individual you care for.

Here is a link to the full document

Life Story

Creating Life Stories with an individual with dementia has far-reaching benefits for the individual, caregivers and the meaningful people in the individual’s life. It records important details and events in the individual’s past and present. Creating a Life Story book helps the individual recall past events, which may improve the individual’s mood as they reminisce about the past. Life Story books foster communication, strengthen relationships, and promote person-centered care. Creating a Life Story involves working with the individual and people, who know him or her, to gather facts about their life, important events, interests, preferences, as well as gathering photographs or even news stories or memorabilia that help tell that individual’s unique life history.

Here is a link to the full document