After a dementia diagnosis: next steps for Worcester County families

What should a family do first after a dementia diagnosis?

Put legal documents in place while your parent can still sign them, a health care proxy and a durable power of attorney at minimum, and learn what stage of dementia the doctor sees and what to expect next.

In Massachusetts a health care proxy names who makes medical decisions if the person cannot. AGE's census found that 90% of assisted living Special Care Residence residents had one on file. A MOLST or POLST form records wishes about life-sustaining treatment.

What help is available at home after a diagnosis?

Adult day health programs, home care through the Aging Services Access Point (which can serve people under 60 with Alzheimer's disease who need respite), the Frail Elder Waiver's dementia coaching and respite, PACE, and caregiver support programs.

The Alzheimer's Association's helpline, 1-800-272-3900, offers free support around the clock. Caregiver burnout is the most common reason home care stops working, so plan for respite from the start.

When is memory care the right move?

When safety at home can no longer be maintained, such as wandering, leaving the stove on, or refusing care, or when the caregiver is exhausted; a Special Care Residence suits people who need supervision but not skilled nursing.

When does someone with dementia need a nursing home instead?

When skilled nursing is needed, for example for wounds, feeding problems, frequent infections or needing two people to move, or when behaviors cannot be managed safely in assisted living.

Many Worcester County nursing homes care for residents with advanced dementia. Compare their CMS staffing and inspection records, and ask about dementia training and how the unit is organized.

What does the Frail Elder Waiver offer people with dementia?

For eligible people, it includes Alzheimer's and dementia coaching, supportive day programs, respite, home-based wandering response systems and personal care.

The Aging Services Access Point arranges the clinical assessment.

Should a person with early dementia move now or later?

There is no single answer, but moving earlier, while a parent can take part in choosing and adjust to new routines, is usually easier than moving during a crisis after a fall or hospital stay.

A residence with both traditional units and a Special Care Residence allows a later move down the hall rather than to a new building.